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nidia74
09-25-2006, 02:09 PM
I am asking for those who have had 1st rib removal to relate post op experiences!!
I am finally authorized for surgery with Dr. Avery October 4th. I am trying to plan what to expect and get what I can in place to make it through this experience in one piece! I am a single mom with an 8 yr. old daughter. Thankfully I have a few family members around who are planning on helping as well as some friends. I am terrified and at the same time excited to have a chance at getting my life "back" or at least to reduce the amount of pain I'm in. Life will never be the same and I realize that, but to be able to experience a little more of it would be something truly exciting.

Some of my questions:
1.How was it right after surgery? Day of? The first couple days?

2.What was it was like when you left the hospital?

3.What was it like getting around?

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?

6.How did you manage pain? Did you need ice a lot?

7.What was it like the first couple of days?

8.The first week?

9.The second week?

10.a month post op?

11.two months post op? etc.?

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?

13.How active were you, ie. walking around?

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?

Thanks so much for any input. I really appreciate it.
Nidia
--
Injured July,2002: 2 door size boxes weighing 120 pounds fell against my back. Concentra, then Dr. Weddington for Thoracic strain, lumbar strain, did PT and acupuncture, R arm began to hurt 1/03, switched Dr's, Dr. Swartz, MRI April, 2003 showed tendonitis in R shoulder/rotator cuff, slight bulgein neck, changed Dr.'s again after Dr couldn't offer any treatment but meds,off work May/03, Dr. Handleman, good relief from osteopathic manipulations &prolo injections. Continued with acupuncture & PT. I was feeling about the best that I had since the injury until Dr. got a crush on me and had to seek new Dr., worker's comp took 4 months to authorize new Dr., got increasingly worse, Dr. McClure diagnosed TOS, had MRI/MRA Nov/04, cervical epidural Nov/04,Began seeing Dr. Hines for pain management, s/x on R shoulder 1/05 w/Dr. Greenwald, cervical epidural 3/05 for neck which helps, began seeing Dr. Rosales/psychologist for cognitive therapy. Had QME psyche eval w/ Dr. Schnneider. Had AME psy
che eval w/ Dr. Kipperman. Had eval w/Dr. Ansel. Cervical epidurals 01/06, 03/06 and facet block injections 8/06 with dr. Giovanniello. Cognitive therapy w/Dr. Shulimson & Now have Thoracic Outlet surgery approved for 1st rib removal with Dr. Avery in SF.




gibbrn
09-26-2006, 12:49 AM
Hi hope I can help with your questions........had first rib removed July 05.....but symptoms are all back with a vengence......here goes.......

Some of my questions:
1.How was it right after surgery? Day of? The first couple days? felt like a train ran over me....trouble climbing stairs out of breath a lot....very tired....had chest tube and only one night in hospital. Was given percocet....lol was on over 150mcg patch of fentanyl so didn't touch my pain very hard to sleep for over two weeks no comfortable positions


2.What was it was like when you left the hospital?

painful.....but I only stayed one night I was at my folks place so Mom helped a lot washed me in tub and did my hair ourside was nice summer so I lay on sunbed and she did it outside

3.What was it like getting around?
Very tired did not leave house for around three weeks..... sucks but no breath and lots of pain couldn't drive had to be taken to doctors etc.......very short of breath I was very slow and cautious all the time

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing? I did most of my own care sat in tub and did what I could...leg hair was a non issue pain was main concern and had to deal with that before anything else. No help with going to toilet lots of stretchy sweat pants comfort was key and no bra of course Mom helped in tub for first few days then I was able to figure it out on my own.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?I had above clavical incision with dressing I changed each day with Mom's help first few times doctor glued...yeah glued my incision shut so no sutures YEAH it healed well but lots of bruising I put a new dressing on each day after bath washed with saline put on polysporin or some abx cream...no name is fine and then no stick pad and gauze then tape

6.How did you manage pain? Did you need ice a lot? Pain meds were key!!!!!!!!!! I had to find right dose and amount but had trouble sleeping till I saw family doctor who is a godsend!!! I did not ice, but did do gentle movements and stretching as I could not too much it was too sore....Ice would be 20 on then 20 off WHATEVER works do it!!!

7.What was it like the first couple of days?
first couple of weeks were hell from poor pain management and then things got better couldn't have a good sleep. hypnosis tapes helped a lot....pm me if you want some for pain control happy to email them to you

8.The first week?[COLOR="darkorange"]see above

9.The second week?see above but got a little stronger breathing easier and could do a little more like wash my hair with help and more stairs and moving around

10.a month post op?was much less pain doing more and felt like less of a train had run me over......rom was much better so could do alittle more

11.two months post op? etc.?better.....no more tos pain gradually coming off all meds doing more....physio started three months after sx so my pain was still there but surgical not Tos pain so each day was better could sleep better and deal with inabilities better that was the most difficult part not being able to do what I wanted to do....type A unfortunatley hope you are not and can relax and not feel guilty like I did

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation? Mom helped me with all of this until I could drive agian by october i was on my own driving unloading dishwasher (hope u have one!!!!) bur did need help for sure....used left hand to eat with fork only coulndt use right until at least three weeks post op....

13.How active were you, ie. walking around?tried to walk a lot, but shortness of breath was an issue so limited by that

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?Million dollar question!!!! I did only what did not cause pain took it easy and thanked God Ihad my parents to hlep me despite my nature to be independant with all things...I am (was) a nurse to cancer patients. Document all things esp calls to comp or ltd as you may need it .....use voice software if you don't already have it Dragon you can get on ebay for about 20.00 us not a bad deal!!! and sooooo worth investment. As for sleeping lots of pillows to get you in the right positon to sleep it was hard to get comfy.........and you will need help with chores....meals and cleaning for at least a month or more


best of luck....any more questions jsut email me happy to help you out...hope some of this helps rather than hinders...!!!! I used to run too will never do that again....so start grieving now....yoga on the other hand is the only exercise i can do so when you feel up to it do what you can Slowly for sure but it is an amazing stretch.......hope you can get back to it I love it.....mental clarity and all!!!!

hugs and support
Victoria rn;)

astern
09-27-2006, 04:32 PM
1.How was it right after surgery? Day of? The first couple days?
Right after was tolerable pain. more uncomfortable from the tubes, IV's and pain pumps insered in me! I was able to go to the bathroom right away, so no cathater! :) You will be D O P E Y. That's a good thing. You'll be weak too. that will slowly come back. But don't try to do things you shouldn't (ie: "oh I feel ok to go lift that book.") you may feel OK from the pain meds, but the tissues aren't ready for that yet.

2.What was it was like when you left the hospital?
Again, very dopey for weeks. Some Dr's don't adequately address pain, I'm sure your's will. But speak up if you hurt. I was on several heavy duty meds all at once, and it didn't kill me. Your body can't heal if it is dealing with pain. I needed help washing my hair and cooking and with all housework. (did I get that? NOOOO. a long story, ending in Divorce.) With my first resection I had lung problems when I left the hospital and had to return for 2 weeks! Pluracy and fever. But the 2nd resection went smoothly and had no adtl issues.

The more time pases after surgery, the more pain there may be, but that's from the muscles/nerves waking up and getting angry. It will subside and is managable with ice or a heating pad, as you see fit.

3.What was it like getting around?
No problem, just moved slowly. I carried nothing heavier than a pillow. You wont be able to drive for a couple months. You may find your center of gravity changed. Just watch that posture in a mirror and practice straight back, shoulders down, etc.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
I needed help preparing meals, getting groceries, trips to checkups, laundry and vacuuming. (did I get that? NOOOO.) After maybe 2 weeks you should be able to handle washing your hair, in a modified way. Needed no help in the bathroom. I did need help cutting my meat which I found humiliating.:rolleyes: You may need help dressing/tieing shoes.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
My incisions were in my arm pits, I needed no help with them. Couldn't shave there for several weeks tho! :p


6.How did you manage pain? Did you need ice a lot?
LOTS of ice (bags of frozen peas) and LOTS of heat, alternating and sometimes at the same time! This will mess with your bodies' thermostat - drove me nuts! But that too will subside. I took Oxycontin 20mg, Tizatidine 10mg, Valium 5mg and a sleeping pill. Suffice it to say I was trippin' for almost 2 months straight. Then I was able to feel well enough to taper off the meds. Have ample pillows and comfey blankets on hand. I was fortunate enough to have a hot tub too - that really helped.

7,8,9,10... all the same as above. It (time) will blend together.

11.two months post op? etc.?
minimal driving, minimal laundry, food prep, other tasks as you see fit. remember: YOU decide what you are ready to do, not your family.

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
NO public transport (except cab) - too rough a ride and you cant afford to have someone bump into you!! Meals and dishes: you need help, or use your good arm and only let your bad arm 'assist' the other arm - NO weight bearing. Laundry was manageable, as i could lift a few items at a time and walk them to the machines (walking: good exercise and do-able). Folding: no problem. NO ironing!!! (hear that Victoria?) :D

13.How active were you, ie. walking around?
I walked whenever I could, but mostly around the house/yard. Great stress reliever! After month 2, I walked 1 mile daily. It's not how far you walk, it's how WELL you walk! Posture, posture, posture. Having a hooded jacket with pockets helped, I rested my arms there a lot.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?
Bags of frozen peas; lightweight/paper plates, cups, etc.; small sized containers (no gallons of milk or huge laundry soap jugs); someone to check on you every other day for a while.

Best of luck and keep us posted as the time draws near!
(((((hugs)))))
Anne

gibbrn
09-27-2006, 10:50 PM
thanks for the tip...lol :p
I'll keep that in mind....
I have changed meds.....increased lyrica to 150 tid and zanaflex(tizanadine 8mg(i only took 4) tid....wow was I flying high!!!!!!!!!!!!!!!!!!! felt stoned as hell....back to high school or what......lol:eek:

Oh.....Nidia one more tip......if it hurts DON'T DO IT!!!!!! and don't EVER be afraid to ask for help you will need it!!!!! Hope you have dragon for after so we can all still help you !!!
Best of luck Victoria

astern
10-08-2006, 12:38 PM
Bumping this up for Rachael and trix.

I may add to it when I feel better ;)
Anne

Rachael
10-08-2006, 04:44 PM
Thanks Astern....this info is most helpful....any others with this experience want to share?? I'm a bit nervous, never had a big surgery like this......

astern
10-08-2006, 06:22 PM
nidia was to have surgery on the 4th. Wonder how she's doing? Hopefully someone will post for her. Wishing her a speedy recovery!!
A.

bmofield
10-08-2006, 11:36 PM
Hi, I'm Bernadette & glad to have you'all as company. I will be posting soon due to my neck burning like crazy lately. Must be a front moving thru. I had a 1rst rib removal obove clav.& a pec minor release on 4-14-06 & could share alot, but it seems you have already very good responders that sounds like my story already. Take good care. bmofield

Jo*mar
10-08-2006, 11:47 PM
nidia - hope you are resting and healing well.
check in when you are able to.


and Welcome bmofield!!

I'm glad you have found us- hope you can post some more soon.

annhere
10-12-2006, 12:19 AM
Hi,

Did anyone out there have a MRA/MRV/MRI...if so what was the narrowing
( MM ) mine 6mm on the right and 7mm on the left. My doc has suggested
surgery...

Thanks

trix
10-12-2006, 10:19 AM
Thank you so much for bumping up this thread. Rachael, do you have a date for your surgery yet? I still haven't heard anything about mine. This info is really helpful, and allows me to plan better for the eventual day that I will go through this. I just know this is going to work, and while I may not emerge at the end pain free, I will at the very least be able to return to a lot of the things I have been able to give up. Hopefully I will be able to buy another motorcycle and ride with my family again. I can hardly wait.
Tracy

Gromlily
10-12-2006, 10:24 AM
Ohhh! I meant to ad my experience to the list but didn't get to it in time!!
Supose it would help now??? Oh well , I'll add my experience just in case it helps others..


1.How was it right after surgery? Great, I was pain free on that side Day of? still good, medicated The first couple days? some difficulty breathing, hoarse voice, weak, but up and about as per Dr.'s orders

2.What was it was like when you left the hospital? A very painful ride home!! Take a pillow with you to hold against you for the ride!!!!

3.What was it like getting around? Slow and easy

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing? I did fine, showered the 1st day without help,etc.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone? Incision was above the collar bone, it was o.k. drain was in chest and had to be drained daily, needed help with that, bandage changed daily, easy stuff.

6.How did you manage pain? Did you need ice a lot? Great pain meds!!! Ice and heat.

7.What was it like the first couple of days? difficulty breathing and constipation were the worst, also had to sleep in a recliner because laying falt on my back made breathing difficult.

8.The first week? Same, began massaging neck and surgical site muscles, had drain taken out

9.The second week? still very weak, massaging muscles in neck and at incision

10.a month post op? still very tender and sore, very weak.

11.two months post op? etc.? same

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation? No, under DR.'s orders did none of the above, had to have help.

13.How active were you, ie. walking around? walked to get back strength, that was about it, that and p.t.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions? lots of ice packs, so one is always cold, squisshy pillows, Edglow p.t., hot baths, loose fitting clothes, no pullovers.

Thanks so much for any input. I really appreciate it.
Nidia Good Luck and Speed healing !!
G~
--

nidia74
10-20-2006, 10:07 AM
hi. i posted this in the get to know you section, but wanted to check in...

2 weeks post-op...Oct 4th.

I'm struggling because of a lot of swelling and still a LOT of pain. I was under retraction longer than expected because Dr. Avery said it was really quite a mess in there. My numbers from mri/mra results that the narrowing was/is oops! 5 mm on right which I had done and 2 mm on left.

I have limited range & control of right arm because of swelling of nerves/ build up of fluid affecting biceps and deltoids. I can move my hand and wrist but that's about it for now. I had full range with my arm day of surgery but overnight the nerves swelled up and I've had a little day to day improvement since. My diaphragm was weak too...failed the sniff test to the extent that it was just very weak...thank goodness not more. i've felt out of breath too, but I've made huge progress strengthening by using the incentive spirometer. I'm very tired and wear out easily but am doing stretching exercises every day. Just going to be very slow!!

I had my first out patient PT appt today(yesterday) which went well. Before surgery, I moved to SLC to have support from family and it's been reassuring to have chosen to do the surgery in SF even though I'm doing recovery/pt in SLC. The therapist said the last surgical case she had was 15 years ago.

She and Dr. Avery have talked at length and I feel very confident with her. She seems very on the ball as far as the right protocols for healing from this surgery and nerve desensitivation. The facility is state of the art at the Univ. of Utah...just very few surgeries are actually performed here.

I have been so impressed with Dr. Avery. I met him a year ago and then again in March. I had to see a neurologist/ Dr. Ansel from w/c and get his go ahead before they would authorize surgery. Dr. Avery was very thorough before and after in his care and responds quickly. His assistant, Ann is really great too. He obviously cares about his patients...and not just those he does surgery on.
i'll give more in depth details/answer my own questions shortly!
thanks for the well wishes...doing my best to heal :rolleyes:
Nidia



Injured July,2002: 2 door size boxes/ 120 lbs. fell against my back. Concentra, then Dr. Weddington for Thoracic/lumbar/cervical strain: PTand acupuncture & went back to "modified" work after a few weeks. R arm began to hurt 1/03, complained to work& Dr without any response, continued getting worse, switched Dr's, Dr. Swartz, MRI 4/03:tendonitis in R shoulder/rotator cuff, bulge in neck. Dr only offers meds & off work May/03. Changed Dr.'s again/Dr. Handleman: osteopathic manipulations &prolo injections,acupuncture & PT. Feeling best since injury until Dr. got a crush on me/had to seek new Dr., wc took 4 mos to authorize, got increasingly worse. Saw Dr. McClure had MRI/MRA Nov/04, d/x Bilateral vascular and neurogenic TOS. Cervical epidural Nov/04. Dr. Hines for pain mgmt. Dr. Rosales for cognitive therapy/psych. S/x on R shoulder 1/05 w/Dr. Greenwald. Cervical epidural 3/05. 12/05. Moved to SLC. Dr. Giovanniello/SLC treating Dr, cervical epidur. 1/06 & 3/06. Pool therapy/PT for TOS. Dr. Shulimson for cognitive therapy/psych. Cervical Facet block injections 8/06, authorized for rib resection/scalenectomy 10/4/06. On Morphine, neurontin, Baclofen, Cymbalta, Relafen, Prevacid, Trazodone, Lidoderm Patches, Imitrex for muscle and nerve pain.
Now: dilaudid, neurontin, ms contin, fentanyl, baclofen, relafen, prevacid, ambien. ativan, cymbalta, lidoderm patches, imitrex, and reglan

astern
10-20-2006, 12:17 PM
Thanks for the update nidia, it sounds like you have every bit of care and assistance you need to get through this! Sending healing prayers your way!!!:) I hope the pain and swelling begins to ease very soon. I also did surgery in one city and PT in another. It's so important that your PT and GP all coordinate your care with the surgeon.

Go very very slow for you now!
Anne

David K.
10-21-2006, 11:15 AM
How are you now since you've had your surgery? I also use Dr. Avery and I will say he is the best ! I have had a wonderful recovery, both sides done one 5/05 then the other side 5/06. If I could just get therapy out of W.C. I could be even better.

David K.
10-21-2006, 11:37 AM
I should of read your update first..... Yes Dr. Avery has wonderful bed side manners. Evryone likes him so you get the best from all the nurses and other doctors. I stayed 5 days in the hospital each time. I had the left side done 5/05 then the right 5/06. I have recovered real good, I'm also having trouble with the breathing. Use the VOLDYNE it really helps. I'm riding my bicycle now so that it helping with the lung power. You can ask Dr. Avery about me I ahve told him and Ann about this web site. I'm his star patient David K.

annhere
10-23-2006, 12:22 AM
I'm having surgery with Dr. Avery in Jan. 07. Due to the fact I have 4 children and my husband sometimes works 6 days a week, I'm trying to get my life in order before I have another surgery.....I had a neck fusion
C4-5/ C5-6 in Oct 2005.

I wrote in an earlier post about the size of the norrowing......mine is 6mm on the right and 7mm on the left. It's nice to hear someone else who's problems are so similar.... My condition seems to be getting worse. But I have to wait and get through the holidays....It's so nice to hear from others who have had surgery with Dr. Avery. Please keep me posted...Thanks

Ann
Pinole, CA

Jo*mar
01-26-2007, 10:23 PM
bumping also

coffelover
04-14-2010, 01:03 PM
Hi There, Like many people i turned to the internet to read about my new diagnosis. I had just been told i had Thoracic Outlet Syndrome. My symptoms were textbook case and started on 4th February 2009. It took months and numerous hospital and doctor referals before i was finally diagnosed with the condition.

I had numerous x rays, MRI Scans, CT Scans (some with dye injected),echo grams, ultrasounds..... the list was endless. I felt like every available test i had. On top of this were of course blood and urine tests galore!!!!

I was then told mid October 2009 that i needed a major surgery procedure. Terrified is putting it lightly. I was otherwise healthy (asthma but well controlled now with no medication) and had never had surgery except for two C Sections for my children. The surgery would consist of removing my first rib and part of the muscle about the right breast (sorry, can't remember its proper name). I was scared stiff and turned to the internet. This site was wonderful for me. To read peoples experiences of the op made me feel slightly more at ease. Knowing what to expect for me works. It's not for everyone but i had to know ALL i could. I even watched a video on You Tube of the operation being done!!

As it was this surgeon backed out just weeks before my op saying he didnt feel qualified enough to do it. I was then referred to the surgeon who infact did my surgery and was wonderful, Mr Paul Wilson at Royal Lancaster Infirmary, Lancaster, England. I had the surgery on 12th March 2010, 13 months after the pain first started. I had a surgeon from Blackpool, England come over to watch and learn from the surgery as it is very rare and finding a surgeon who knows how to do the procedure was hard. There was quite a crowd in theatre watching all that went on.

I wanted to write my thanks to the people on this site for helping me, allowing me to read their stories was much needed. I now wanted to do the same, post my experience in the hope i too can help someone by sharing my experience.

I am now nearly 5 weeks post op.

Starting with the surgery. I had 3/4 of my first rib removed on the right side, this was my affected side. I also had half of the muscle taken away as explained earlier. I also ended up having to have my nerve cut that runs across my right side of chest and down my right arm. This was to keep permanent nerve damage to a minimum. The nerve had been badly compressed and stretched during my early months pre surgery. Once they opened me up they found things to be a lot worse than they thought and the surgeon said i would of been in a lot of pain just from them trying to get into the area. This explained why i felt like i had been hit by a ten ton truck. Surgery took 2hrs (double the expected. My husband had been told around 1 hr). I was in recovery for 4 hours. I walked into theatre at 8.45am and only got to the ward 3.30pm. I had a PCA with morphine in up for 5 days. After it got took down i went on to oral morphine as well as other meds, paracetamol etc. My hospital stay again was longer than i had been told. I originally was due to be between 1 and 4 days. Due to the extreme procedure done this infact went to 9 days in hospital. I came home on Paracetamol, Codeine Phosphate,Diclofenac Sodium,Amitriptyline. Other meds for constipation and bowels.

Driving home from hospital was a nightmare, every bump in the road was agony. Walking to the toilet and back to the settee was enough for the first week and into the second week. By the third week i had a little walk round the road i live on. Standing up is more painful, try to support your arm the best you can. You do tire very easily. Just take it easy and remember to listen to your body. I very stupidly tried to cut down my pills and got very upset, crying that i couldn't cope anymore. 3 weeks after this surgery is far to early to bthinking of cutting back on medications, i learnt that the hard way.

My husband had a month of work to look after me and the children. This week he has gone back to work and im doing ok. I walk around the house no problems now, car journeys are still a little painful but a lot better. I have made meals on the last 2 nights with some help but this tires me out. I do manage washing but not pegging out or ironing. Light housework, ie; dusting wiping down i can do no problem. It's little doses then nothing gets too much. I am however no where near ready for driving myself. I am hoping another couple of weeks.

I forgot to say from day one i showered myself, more down to my determination... very difficult and certainly not a shower to the degree you would normally have but you do and can get by doing that yourself. My surgery was done via under the arm. My scar is around 10cm long (not that i have measured it, it's a guess!!)

I hope i havn't gone on too much and this does help. If i have missed anything you want to know when reading this, im sorry. I will check back on here in a few more weeks when there may be more to write. I go back to my surgeon exactly 8 weeks to the day of surgery.

I have had odd days of the same pre op pain and discolouration but my surgeon did say this may happen so i am not worrying about that yet!!


I copied your post here to a new thread of your own - so we can say hello, you can find it on this page - on the main TOS page thread list -
http://neurotalk.psychcentral.com/forum24.html

richard d
04-18-2010, 07:53 PM
I have been under the impression that a scalenectomy without 1st rib removal is the operation of choice by the leading thoracic outlet surgeons these days, anyone care to share their opinion of this position and any information that is relative to the two procedures.:):)

thanks rich

Sheri_TOS
04-19-2010, 12:46 AM
I have been under the impression that a scalenectomy without 1st rib removal is the operation of choice by the leading thoracic outlet surgeons these days, anyone care to share their opinion of this position and any information that is relative to the two procedures.:):)

thanks rich

Richard - I don't know if there's one preferred approach. Neither surgeon I talked to performed just the scalentomy. For me, my 1st rib had to go as I had a large bone growth on it. It's been 5+ years and I am so glad I tried the surgery. Suspicion is I have triggered TOS on the other side due to a shoulder injury/surgery but I'm predisposed on this side, too, due to a cervical rib.

Hairgirl
04-19-2010, 03:38 PM
I am 8 week post surgery and am in more pain now than before surgery! I had the first rib resected on the right side through the arm pit and my right arm has been on fire every sense, the middle two finger of my right hand feel like they have been hit with a hammer. I am taking 1200 mg of neurotin a day to make the pain tolerable but this is very difficult to deal with.
Has any one else exeriance these symptoms?




************************************************** ********
[B][COLOR="Red"]I copied your post here to a new thread of your own - so we can say hello, you can find it on this page - http://neurotalk.psychcentral.com/thread119722.html

Janice2008
05-26-2010, 10:02 AM
I think recovery has a lot to do with the experience of the surgeon.

In October of 2008 a man hit me head on, it was a high speed violent crash. The area we live in isnt the best for experienced Doctors, so I decided that it was worth the two hour drive to a orthopedic doctor with a great reputation. At first he suspected TOS, but was reluctant to make a diagnosis until more time had passed. IIRC it was about my 4th appointment that he pretty much made the diagnosis of TOS and then refered me to a specialist.
The specialist was about 4-5 hours from my house, but he had one of the best reputations in the surgical world, so I felt fairly confident that I was in good hands.
I've never been the type to complain of pain, even when they were doing the nerve tests it never really bothered me that much, maybe I just had a high threashold to pain, IDK. Anyhoo, he diagnosed me with bilateral TOS in Aug 09, that is when it really hit home.
I already knew that my life changed forever due to all of this, long gone were the days of riding quads and drag racing. I was lucky to be alive and I knew that it was still a better deal to be here and have to give up a few things than to have died that day.
I remember being in his office and it over looked the entire city, and I was staring out admiring the view and couldn't really concentrate on what was being said, but I remember my husband saying "how soon can you do the surgery, I don't want her living like this anymore"
The surgery was scheduled rather quiclky, and from that moment on I went into extrememe PMS mode, I was so scared and I honestly thought I was going to die, not from the surgery but from being put to sleep.
We went down the night before and stayed in a hotel, I didn't sleep at all.
The morning of the surgery was the worst, I think it was the annticipation of not knowing how I was going to come out of this that was what made me sick. But I also knew this was my ONLY shot at a some what normal life again. I littlerly broke into tears when the nurse put the IV in my arm, and I begged the anistiologist not to tell me when he put the sleeping stuff into me. At first he thought I was a control freak, but I explained to him in tears, how I saw that man cross the double yellow line and I knew it was comming, and in a moment I knew that I might not make it that day. I don't want to know when I'm going to go, I want to enjoy my life to the last second, not live in fear. I don't know if anyone can understand what I mean by that.
I dozed off with my husband by my side holding my hand, and if I wouldn't have made it- At least he was there.
I grogily woke up as they were wheeling me into a elevator and I saw the back of my husband, but he didn't know I was there, I was too weak and could even say anything but I was throwing a fit. I remember the nurse saying what is wrong and then he turned around. From that moment on he didn't leave my side, poor guy even slept in a hospital chair even tough we had a hotel room for him. I think I was back in the room around 1pm, and I didn't do much but sleep until about 7pm. At first I needed help getting to the bathroom, but it was just walking. I think it was probally among the top of my most embarrising moments, but I got my period during the surgery, so ugh nevermind. Anyhoo, after aboout 10pm I started to get up and go to the bathroom myself by sheer determination. Hubby was asleep and I didn't have the heart to wake him, after the long drive the day before and I knew he didn't sleep a wink either, so I just wanted to try. It seemed like I had to go every hour. I learned quickly that when I had to cough, it was soothed a lot more when he placed his had on my back, just the weight of his hand helped with the pain. The biggest complaint I had was the little plastic contraption that measured lung compacity, and it was so hard to do, but every time I did it it got better.
The next morning they took the tube out of my chest, that was quite painfull and sent me home with some morphine pills and oxycontin.
The drive home wasn't bad, I expected much worse. I think it has alot to do with the fact that we took the Escalade with us, and that has a very smooth ride. It felt like it took a long time to get home.
I took it easy for a few days and didn't really do to much. Before I left I made sure ALL the laundry was done and we have enough clothes to last a month or more. I had alot of people that said they would help with the house work, but I never really felt comfterable with someone doing my chores.Before I left I did thorough reasearch to the best of my ability on what to expect, and was even at the point where I wanted to take the dishes out of the cabinets so I would be able to access them, but in the end it wasn't neccissary. I learned to use my other hand and arm for a lot of things and before I knew it I was back to normal. To this day I still use my other arm for anything that I can. I read stories of people sleeping in recliners and not being able to walk, none of that really applied to me. Most people couldn't even tell that I had the surgery done. I wasn't allowed to drive for a few weeks, but it wasn't a big deal. I was told by local Doctors that I might never go back to my job, but in January I did. Somedays it sucks, but I can't let TOS win. During the surgery some of the nerves were cut, so I have weird sensations in my arm, most if not all will completely disappear with time. Other than that I feel like the whole thing went rather smoothly and I am happy that I went threw it because I honestly believe that it gave me a new lease on life. There will alwasy be things that I can no longer do, but atleast now I can go to work and still do normal things. I have yet to have the other side done, mostly because it doesn't give me enough of a problem to justify the second surgery. I think the surgery is major, and anyone considering it should also consider the long term affects because without a experienced doctor, the results can be devistating. I was lucky and had a wonderfull doctor that not only had excellent skill, but also was very caring and compassionate.


**********************************
I copied this post to a new thread for new member & greetings -
http://neurotalk.psychcentral.com/showthread.php?t=123168

tshadow
05-28-2010, 12:02 PM
I am 8 week post surgery and am in more pain now than before surgery! I had the first rib resected on the right side through the arm pit and my right arm has been on fire every sense, the middle two finger of my right hand feel like they have been hit with a hammer. I am taking 1200 mg of neurotin a day to make the pain tolerable but this is very difficult to deal with.
Has any one else exeriance these symptoms?




************************************************** ********
I copied your post here to a new thread of your own - so we can say hello, you can find it on this page - on the main TOS page thread list -
http://neurotalk.psychcentral.com/forum24.html

Primarily to Hair Girl:

I think it has to do with so many factors - HOW did you get TOS, a car accident, or like me over time on a computer, etc.

Then, who's your surgeon - hospital, etc.? That's why we list those docs...but even that can't guarantee anything.

And then how you act afterwards - trying all you can NOT to make scar tissue, listening to your body and speaking up for yourself against docs or PTs who think they know but have never had it!

Lastly TIME. I've had this 8 years. I got surgery in "06, so 2 years ago, and my pain is less. Less if not almost all headaches, and honey, they used to be so horrid I just laid and the tears melted down my face - not even crying, just tears melting...I prayed, "God, why, help me, either take me or stop this, but why?"

Now it's better. Mostly I think because I found the pain meds and light massage that WORK FOR ME. I walk only when and how far I can. I don't get bugged by people anymore - they can say what they want - I know what I have, and it's not psychological at all. It's a nerve injury.

God bless us all and HANG in there. Yes, I still have horrific times...but I don't die - they go, eventually. Get home care somehow if you need it - social worker, or how? Get it. That helped me so much when I found a lady who just knows where the painful nerve spots are.

Serenity10
05-31-2010, 11:05 AM
I am so glad to have found this website, I am 4 wks post 1st rib resection on the left and feel very similar to you. I have supposedly the best dr. in the area and trust that things went well but am in so much pain in the armpit down to my wrist. My chest pain is improved but now the pain seems to extend up to my neck. Have you done any physical therapy? I'm a nurse and can not see spending my life on pain meds as I won't be able to treat others. My dr. says it just takes time. and that even 2 months is still early.

BexUK
09-18-2010, 05:12 PM
Hi there,

I know this is pretty late to be adding to the thread was started a while ago, but I'm new on here thought I'd add my experiences seeing as I just had my cervical rib removal on 24th August. Before that I spent hours searching the internet to find out how other people had got on after the op so thought I'd contribute!

The procedure was supra-clavicular and I had the scalene muscle as well as the right cervical rib removed as it was constricting the subclavian artery and I was experiencing emboli in my fingernails as a result, as well as a pulsing mass in my neck (an early aneurysm as it turns out).

1.How was it right after surgery? Day of? The first couple days?
The surgery took 4 hours but went to plan and when I woke up my whole shoulder was completely numb, so had no pain at all. The worst thing was actually the nausea - I was in recovery for a couple of hours before they got it under control. I was attached to a patient-controlled analgesia pump (morphine) so during the night and the next day I used this and had very little pain. I was pretty wiped out, and drifted in and out for about 12 hours after the op.

2.What was it was like when you left the hospital?
I was discharged 44hours after the operation and although I was stiff and sore, I managed fine on 4g paracetamol/day. Definitely get someone who's a smooth driver to get you home though!
The thing I have found most difficult is being able to find a comfortable position to sleep in - the first week I basically had a pile of pillows and slept on my back, although I'm naturally a side-sleeper. After a couple of weeks I was more able to lie on my side, with a pillow to support the weight of my arm.

3.What was it like getting around?
My shoulder was stiff so reaching for things was difficult, but my doctors had told me to keep it moving and the physiotherapist had given me exercises to do so it didn't freeze, so it started to get more mobile fairly quickly.
I mostly found that I got tired much more quickly than I ever have before - I'm 26 and a gym-bunny so it was a shock to find how difficult it was just to walk down the road when I first ventured out about a week after the op.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
I was tired for the first week or so, I think due to the general anaesthetic and the trauma to my body, but I could shower by myself and get dressed (but only in clothes that didn't involve me lifting my arm!).
The only thing I really struggled with was brushing my hair, which I had to enlist help with!

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I had an incision above my collarbone and was told to leave the dressings on for the first 2 days and then change it every 2 days after until it was completely sealed at 7-10 days. As my chest is now pretty much numb on the right side (my T1 nerve was also caught over my rib, so was stretched in surgery) I didn't have much problem in changing the dressings myself, but it's useful to have someone to help.
The incision was really neat and was stitched closed with subcutaneous stitches, so no need to have them removed.

6.How did you manage pain? Did you need ice a lot?
I was told to use a hot water bottle on my shoulder to relax the muscles, and it did seem to help. Other than that, I just stayed on top of taking my paracetamol 4x a day and made sure I rested up and didn't overdo it. It can get frustrating to be sitting around, but it's just not worth making yourself feel worse.

7.What was it like the first couple of days?
(see above)

8.The first week?
9.The second week?
I got back on my feet fairly quickly (I think I've been fairly lucky with my recovery time) and started back at uni after 2.5 weeks. My shoulder is still painful sometimes, especially when I'm on my feet a lot (my trapezius is tending to cramp up a lot) but I'm getting back to my normal routine and don't find that it's limiting me too much at this point (3.5 weeks post op)... my physio said I can start going to the gym again (as long as I take it easy) and I've got to start building up the strength in that arm as well.
The wound healed pretty well and now I'm massaging it with bio-oil as advised and it's getting much less noticable :)

10.a month post op?
11.two months post op? etc.?
Don't know yet!

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
Luckily my boyfriend has been amazing and doing most of this for me. I still have limited mobility in my neck, but my physio thinks I should be able to drive again soon.

13.How active were you, ie. walking around?
I tried to get up and about quite quickly, but the first week or so I did feel wiped out. Going out for 30mins at a time were more than enough for me at the start, but I'm now doing normal days and am feeling more myself.


Like I say, I seem to be lucky with my recovery time and I actually think the numbness across my chest (including my incision site) may have actually made it more bearable pain-wise, especially in the first couple of weeks.

I just thought I'd post as it can be scary hearing about everything that can go wrong before the op, but it can go right. I'm actually grateful that in my case it was arterial TOS as it meant I didn't have a lot of choice about whether or not to have surgery as the risk of not going ahead were too high. I'm just keeping my fingers crossed that my subclavian artery will be in good shape when I go for my 6-week follow up with my surgeon and will have repaired itself without further intervention.

joanc
09-19-2010, 05:42 PM
I am new to this site and your posts have been very educational. My daugher is facing
1st rib removal and I would like to ask if your surgeries were performed by vascular or orthopedic surgeons??? Thanks so much. We are a little confused right now and looking for referrals in Atlanta GA.

(Broken Wings)
09-19-2010, 09:54 PM
I am new to this site and your posts have been very educational. My daugher is facing
1st rib removal and I would like to ask if your surgeries were performed by vascular or orthopedic surgeons??? Thanks so much. We are a little confused right now and looking for referrals in Atlanta GA.

Welcome

Sorry your daughter has been dxd with TOS. TOS is quite miserable to live with. You have found the right place for support and answers.

Confusion is part of it. There's a lot of complex things that goes along with TOS. Please, just don't rush into surgery. Get your answers before surgery. There's lots of resources here.

This is the Doctor's link. It's at the top of the TOS page here.

http://neurotalk.psychcentral.com/thread135.html
Scroll down to GA.

I was happy to see my wonderful cardiothoracic surgeon listed in KY, Dr. Atasoy. He's the only one listed too. He helped me a lot, with my other medical problems too. I found him 4 1/2 years after my accident. So I had been through the mill by then. He recommended surgery for me but I did not have that. Long story...

This is a painful condition, so that's normal. not sure if you're describing a more serious form of TOS. The after care by other healthcare providers needs to be TOS trained.

So many things about TOS.

Just look around, ask specific questions. We'll help all we can.

Useful links:

TIPS FOR TOS:
http://neurotalk.psychcentral.com/showthread.php?t=43297&highlight=tips

http://neurotalk.psychcentral.com/showthread.php?t=84&highlight=tips

http://neurotalk.psychcentral.com/showthread.php?t=84&highlight=tips&page=2

We do understand. And again, so sorry she has TOS...

Bear29
09-22-2010, 05:39 PM
I am new to this site and your posts have been very educational. My daugher is facing
1st rib removal and I would like to ask if your surgeries were performed by vascular or orthopedic surgeons??? Thanks so much. We are a little confused right now and looking for referrals in Atlanta GA.

FYI My diagnosis and surgery was performed by a vascular surgeon.

Thanks and good luck!

SpareRib
09-28-2010, 03:58 PM
Hi Bex - and others,

I like you searched the internet for advice months prior to my surgery, and struggled to find positive accounts and constructive advice. Cheers for taking the time to post it up Bex!

I had a left cervical rib removal just last week, 20th Sep. It was impinging on the main artery as well as the nerves.

I am in quite a bit of pain but managing it with paracetomol and gabapentin (for nerve pain). I also have very limited mobility, and a lot of stiffness but I know that is to be expected from what I've read here.
I am pretty in the dark however about recovery time and what I will and won't be able to to do over the next few weeks and months. Accounts seem to vary so much don't they?

Bex - please keep me posted as I'd love to know how you get on. I am also very active, 30 years old and used to going running/ do yoga regularly. I'm hoping I'll be able to do that again in the not too distant future, but it seems a million miles away right now!!! I'm surprised you're going to the gym, is jogging etc. ok for you after so short a recovery time?

All best,
SpareRib



Hi there,

I know this is pretty late to be adding to the thread was started a while ago, but I'm new on here thought I'd add my experiences seeing as I just had my cervical rib removal on 24th August. Before that I spent hours searching the internet to find out how other people had got on after the op so thought I'd contribute!

The procedure was supra-clavicular and I had the scalene muscle as well as the right cervical rib removed as it was constricting the subclavian artery and I was experiencing emboli in my fingernails as a result, as well as a pulsing mass in my neck (an early aneurysm as it turns out).

1.How was it right after surgery? Day of? The first couple days?
The surgery took 4 hours but went to plan and when I woke up my whole shoulder was completely numb, so had no pain at all. The worst thing was actually the nausea - I was in recovery for a couple of hours before they got it under control. I was attached to a patient-controlled analgesia pump (morphine) so during the night and the next day I used this and had very little pain. I was pretty wiped out, and drifted in and out for about 12 hours after the op.

2.What was it was like when you left the hospital?
I was discharged 44hours after the operation and although I was stiff and sore, I managed fine on 4g paracetamol/day. Definitely get someone who's a smooth driver to get you home though!
The thing I have found most difficult is being able to find a comfortable position to sleep in - the first week I basically had a pile of pillows and slept on my back, although I'm naturally a side-sleeper. After a couple of weeks I was more able to lie on my side, with a pillow to support the weight of my arm.

3.What was it like getting around?
My shoulder was stiff so reaching for things was difficult, but my doctors had told me to keep it moving and the physiotherapist had given me exercises to do so it didn't freeze, so it started to get more mobile fairly quickly.
I mostly found that I got tired much more quickly than I ever have before - I'm 26 and a gym-bunny so it was a shock to find how difficult it was just to walk down the road when I first ventured out about a week after the op.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
I was tired for the first week or so, I think due to the general anaesthetic and the trauma to my body, but I could shower by myself and get dressed (but only in clothes that didn't involve me lifting my arm!).
The only thing I really struggled with was brushing my hair, which I had to enlist help with!

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I had an incision above my collarbone and was told to leave the dressings on for the first 2 days and then change it every 2 days after until it was completely sealed at 7-10 days. As my chest is now pretty much numb on the right side (my T1 nerve was also caught over my rib, so was stretched in surgery) I didn't have much problem in changing the dressings myself, but it's useful to have someone to help.
The incision was really neat and was stitched closed with subcutaneous stitches, so no need to have them removed.

6.How did you manage pain? Did you need ice a lot?
I was told to use a hot water bottle on my shoulder to relax the muscles, and it did seem to help. Other than that, I just stayed on top of taking my paracetamol 4x a day and made sure I rested up and didn't overdo it. It can get frustrating to be sitting around, but it's just not worth making yourself feel worse.

7.What was it like the first couple of days?
(see above)

8.The first week?
9.The second week?
I got back on my feet fairly quickly (I think I've been fairly lucky with my recovery time) and started back at uni after 2.5 weeks. My shoulder is still painful sometimes, especially when I'm on my feet a lot (my trapezius is tending to cramp up a lot) but I'm getting back to my normal routine and don't find that it's limiting me too much at this point (3.5 weeks post op)... my physio said I can start going to the gym again (as long as I take it easy) and I've got to start building up the strength in that arm as well.
The wound healed pretty well and now I'm massaging it with bio-oil as advised and it's getting much less noticable :)

10.a month post op?
11.two months post op? etc.?
Don't know yet!

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
Luckily my boyfriend has been amazing and doing most of this for me. I still have limited mobility in my neck, but my physio thinks I should be able to drive again soon.

13.How active were you, ie. walking around?
I tried to get up and about quite quickly, but the first week or so I did feel wiped out. Going out for 30mins at a time were more than enough for me at the start, but I'm now doing normal days and am feeling more myself.


Like I say, I seem to be lucky with my recovery time and I actually think the numbness across my chest (including my incision site) may have actually made it more bearable pain-wise, especially in the first couple of weeks.

I just thought I'd post as it can be scary hearing about everything that can go wrong before the op, but it can go right. I'm actually grateful that in my case it was arterial TOS as it meant I didn't have a lot of choice about whether or not to have surgery as the risk of not going ahead were too high. I'm just keeping my fingers crossed that my subclavian artery will be in good shape when I go for my 6-week follow up with my surgeon and will have repaired itself without further intervention.

BexUK
10-03-2010, 01:26 PM
Hi SpareRib :)

It sounds like we had something very similar done - I hadn't come across anyone before who had the same combination of artery and nerve impingement.

I was surprised by how quickly I've healed, as I read a lot of accounts before I went in for my op and they all seemed to suggest it would be months before I could even consider getting back to normal. My surgeon said that I would probably need to take 3-6 weeks off uni, but I actually got back after a couple of weeks so I think I've just been lucky.

I'm 5 weeks post op and I'm managing to jog, cycle and cross-train at the gym now, and mostly I'm just limited by my lost fitness! The main problem was the stiffness at first - I could barely move my shoulder or neck. After a week or so it really started to loosen up though and the improvement over the next few weeks was quite dramatic. My shoulder and neck are almost back to normal now in terms of mobility, although my physio is telling me to make sure I don't overdo lifting etc as it could cause me damage.

The numbness across my chest is still there, and I think might be a permanent fixture, but it's still early days so keeping my fingers crossed I'll get normal sensation back.

How are you getting on now? Is your pain getting better? I hope you're starting to feel more human - for a week or so after the op I was exhausted and found everything more work than it should have been! Hope this has been kinda informative and makes you feel more optimistic about recovery :)

Take care,
Bex


Hi Bex - and others,

I like you searched the internet for advice months prior to my surgery, and struggled to find positive accounts and constructive advice. Cheers for taking the time to post it up Bex!

I had a left cervical rib removal just last week, 20th Sep. It was impinging on the main artery as well as the nerves.

I am in quite a bit of pain but managing it with paracetomol and gabapentin (for nerve pain). I also have very limited mobility, and a lot of stiffness but I know that is to be expected from what I've read here.
I am pretty in the dark however about recovery time and what I will and won't be able to to do over the next few weeks and months. Accounts seem to vary so much don't they?

Bex - please keep me posted as I'd love to know how you get on. I am also very active, 30 years old and used to going running/ do yoga regularly. I'm hoping I'll be able to do that again in the not too distant future, but it seems a million miles away right now!!! I'm surprised you're going to the gym, is jogging etc. ok for you after so short a recovery time?

All best,
SpareRib

Sarahqwert
03-20-2011, 03:37 PM
I just had my first rib removal four weeks ago and like Bex, I spent hours searching the internet so I thought i'd add my experience

1.How was it right after surgery? Day of? The first couple days?
The surgery took 4.5 hours and longer than expected as I had big dense bones and when I woke up my whole shoulder was completely numb, so had no pain at all. I wasn't allowed to leave the bed for 12 hours after the GA so I had a very sore back from sitting in the same position for hours. Next day was much better and started to move about and all the drains and oxygen were removed.

2.What was it was like when you left the hospital?
I was discharged 2 days after the operation and although I was stiff and sore, I managed fine on 4g paracetamol/day and diclofenic. It was hard to sleep for the first few days so I used several pillows.

3.What was it like getting around?
Left the house after 4 days to walk around, I was pretty tired and it took longer than expected and I avoided the crowds, 15 mins of walking was all I could manage.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
It was all fine, only needed help with shopping as I live 20 mins walk from shops and couldnt carry much.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I went to the Dr to change one of the dressings and then I changed it for the second time.
The incision was really neat and was stitched closed with subcutaneous stitches, so no need to have them removed.

6.How did you manage pain? Did you need ice a lot?
I was never in much pain as the area was (and still is numb) but used paracetamol and diclofenic.

7.What was it like the first couple of days?
(see above)

8.The first week?
It was traumatic going out in large crowds for the first time as most people in London don't pay much attention to what they are doing and will happily barge your shoulder!

9.The second week?
I got back on my feet fairly quickly, I was back at work after 2 weeks, walking around to a normal pace after one week and back in my bike after 1.5 weeks. I wasn't given any physio instructions so after 3 weeks I was back running and now after 4 weeks I am able to run 15km with some soreness around my neck. I have been to see an osteopath so help move my muscle back into place and losen them up.

10.a month post op?

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
Traumatised by my first trip out but friends helped for the first two weeks and then I was back on the tube to work.

13.How active were you, ie. walking around?
I was walking about after 4 days but very slowly, noticably better after one week so I could walk at normal pace. Out on the bike after 1.5 weeks for a light cycle and then running after 3 weeks. 4 weeks after the operation I have been able to run for over 4 hours in total this week and 2 hours on the bike.

I am training for triathlons so I went into hospital with a high level of fitness, I think I have been very lucky to recover so quickly when looking at other people's experiences but I think my fitness level helped a lot. 4.5 weeks down and I am almost back to 100% with some neck soreness and numbness in the chest area.


Hi Bex - and others,

I like you searched the internet for advice months prior to my surgery, and struggled to find positive accounts and constructive advice. Cheers for taking the time to post it up Bex!

I had a left cervical rib removal just last week, 20th Sep. It was impinging on the main artery as well as the nerves.

I am in quite a bit of pain but managing it with paracetomol and gabapentin (for nerve pain). I also have very limited mobility, and a lot of stiffness but I know that is to be expected from what I've read here.
I am pretty in the dark however about recovery time and what I will and won't be able to to do over the next few weeks and months. Accounts seem to vary so much don't they?

Bex - please keep me posted as I'd love to know how you get on. I am also very active, 30 years old and used to going running/ do yoga regularly. I'm hoping I'll be able to do that again in the not too distant future, but it seems a million miles away right now!!! I'm surprised you're going to the gym, is jogging etc. ok for you after so short a recovery time?

All best,
SpareRib

josepentia
04-06-2011, 11:57 AM
bumping for new members (myself included) and those who recently completed this surgery!! :)

184jones
04-11-2011, 02:22 AM
I just had my first rib removal four weeks ago and like Bex, I spent hours searching the internet so I thought i'd add my experience

1.How was it right after surgery? Day of? The first couple days?
The surgery took 4.5 hours and longer than expected as I had big dense bones and when I woke up my whole shoulder was completely numb, so had no pain at all. I wasn't allowed to leave the bed for 12 hours after the GA so I had a very sore back from sitting in the same position for hours. Next day was much better and started to move about and all the drains and oxygen were removed.

2.What was it was like when you left the hospital?
I was discharged 2 days after the operation and although I was stiff and sore, I managed fine on 4g paracetamol/day and diclofenic. It was hard to sleep for the first few days so I used several pillows.

3.What was it like getting around?
Left the house after 4 days to walk around, I was pretty tired and it took longer than expected and I avoided the crowds, 15 mins of walking was all I could manage.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
It was all fine, only needed help with shopping as I live 20 mins walk from shops and couldnt carry much.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I went to the Dr to change one of the dressings and then I changed it for the second time.
The incision was really neat and was stitched closed with subcutaneous stitches, so no need to have them removed.

6.How did you manage pain? Did you need ice a lot?
I was never in much pain as the area was (and still is numb) but used paracetamol and diclofenic.

7.What was it like the first couple of days?
(see above)

8.The first week?
It was traumatic going out in large crowds for the first time as most people in London don't pay much attention to what they are doing and will happily barge your shoulder!

9.The second week?
I got back on my feet fairly quickly, I was back at work after 2 weeks, walking around to a normal pace after one week and back in my bike after 1.5 weeks. I wasn't given any physio instructions so after 3 weeks I was back running and now after 4 weeks I am able to run 15km with some soreness around my neck. I have been to see an osteopath so help move my muscle back into place and losen them up.

10.a month post op?

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
Traumatised by my first trip out but friends helped for the first two weeks and then I was back on the tube to work.

13.How active were you, ie. walking around?
I was walking about after 4 days but very slowly, noticably better after one week so I could walk at normal pace. Out on the bike after 1.5 weeks for a light cycle and then running after 3 weeks. 4 weeks after the operation I have been able to run for over 4 hours in total this week and 2 hours on the bike.

I am training for triathlons so I went into hospital with a high level of fitness, I think I have been very lucky to recover so quickly when looking at other people's experiences but I think my fitness level helped a lot. 4.5 weeks down and I am almost back to 100% with some neck soreness and numbness in the chest area.

Well done! having read some bits on this website, it seemss the the post operative recovery can beinfluenced by what sort of TOS and rib resection you had and by the level of fitness before the op

I am 7 weeks post op for a rib resection and scalenectomy and its a bit of a roller coaster. I only had 10 days from initial symptom & diagnosis to the actual operation as mine was arterial and had already had a blood clot in my hand.
It was a whirlwind of tests, specialists and second opinions and almost wish I had more time before the operation to prepare mentally. I went from being quite fit (still need to shed a few kilos!)with a cold, numb finger to the operation and completely imoble and that was the real shock.

The operation was abouto 4.5 hours and the first few days after the op were agony with shoulder pain and breathing problems. My diaphram had come right up my chest due to nerve paralysis adn was extremely uncomfortable. I take my hat off to all those people who were discharged after one or two nights, I was in hospital for over a week and had physio twice a day from day 2. I was on morphine for 3 days which gave me migraines and for the first 2 weeks after the operation i was unable to sleep for longer than 2 hours at a stretch.

Things do improve, I have been lucky with complete home help ( we live in Singapore) and so I think my recovery has speeded up as I have been able to rest as much as I want.

7 weeks down the track, still having pain in my elbow and this last week periodic coldness of my middle finger (this is not painful just irritating). It seems that the pec muscle may be pinching as this is very tight and painful. I have been back to my surgeon who has put me on muscle relaxants to see if it is truly the cause ( I think this is why, Singaporean surgeons are great but not at explaining things).

I have begun to exercise again, managed 20 mins on the runner today and am feeling very chuffed with myself.

My scar has healed really well, if anyone is contemplating the surgery its worth asking if a plastic surgeon can close up. Its not much cost in the relative scheme of things and because of the location of the surgery lots of insurance companies will pay for it.

I have been shocked by the total cost of the whole procedure and thank god that we had great medical over. So far my bill has come to approx SGD $60,000 ($48,000USD aprrox) and that is without any of the physio which they estimate for another $5000SGD.

I had Arterial TOS so there was no option to not have surgery but I have realised I will rpobably take the full 3-6 months to fully recover

josepentia
04-18-2011, 04:11 PM
1.How was it right after surgery?
Right after surgery, (45 min in recovery) I was brought up to my patient room. I was given morphine very two hours on the dot, though the morphine wore off at about the one hour mark- which made it difficult to wait the extra hour! The surgery lasted just over two hours and it started at 345p. By the time 11p hit, I was ready to go to the bathroom. The nurse ďspottedĒ me as I walked in and out of the bathroom to the bed, but otherwise I could do everything else on my own. My largest pain was in my left shoulder blade. They didnít put me in traction while in the OR, but my shoulder blade was on FIRE! This made any sort of sleep impossible. I laid on my right shoulder with a pillow holding the left side of my back at a 45 degree angle or so. PLUS- they come in every hour to check vitals and what not. No sleep at all.

2.What was it was like when you left the hospital?
I left the very next morning by 1030. Not even 24 hours in the hospital (incl pre-op!) I didnít have a drain or pump for my lungs, and the surgeon thought I was strong enough to leave. I didnít suffer any nausea until this morning from the morphine, so I sent my husband to get my Vicodine from the pharmacy and had the nurse take my IV out. Husband came back, took the Vicodine and half an hour later I was in the wheelchair out the door! Had a big fluffy pillow to rest my arm on for the short ride home. Husband was a careful and considerate driver. Did get very woozy tho, be mindful of that possibility.

3.What was it like getting around?
Getting around on Vicodin was troublesome. I took Vicdodin for only the day I was discharged and then quickly switched to ADVIL during the daytime and Vicodin for the nighttime/sleep. This was I could get around without getting woozy.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing? I did just fine getting around when I switched to ADVIL during the daytime. I needed some help getting dressed (bra, shirts, ect.) However, showering I did fine and doing my makeup was fine as well. Although my shoulder was sore as a whole, I was already able to lift my arm higher than 90 degrees on the morning of day two post op to do my hair.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I didnít need help with the incision- They closed it with sutures internally and derma-bonded the outside. I didnít have a drain or tube for my lung. I DID BLOWDRY my armpit dry instead of with a towel though. Oh, they went through my left armpit. 

6.How did you manage pain? Did you need ice a lot?
I took Vicodine for the whole day that I was discharged. The next morning I switched to taking ADVIL all day and only taking the Vicodine before sleep. I am 6 days post op now and will continue this routine for another few days.

7.What was it like the first couple of days?
I slept fine when in my own bed, however the left shoulder blade pain was by far the most intense pain to have delt with. Finding a comfortable position was tough, slept half on my back and half on my right shoulder. Breathing was fine, though breathing deep (like youíre supposed to do) was difficult because of the severe shoulder blade pain. I second the constipation factor- buy some milk of magnesium and take it day two or three post op when youíre home. Things are slow in the house, but I was up and moving my arm on day two post op.

8.The first week?
Same story, start doing more and more with that arm- raising hand above my head. Day three at night I could raise my left arm 180 degrees. Didnít have pain doing this, it was just tight and uncomfortable. No heavy lifting.

9.The second week?
Not even there yet.


Skip 10 and 11

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
No public tans, I did dishes with my right hand just fine, got around just fine, shopped fine. I bought a sling and ONLY used it when I went to the store, if anything, just to tell people non-verbally that Iím injured and donít walk into me. Give me some space, was the msg with the sling. Worked great. Didnít wear the sling while at home, outside in the yard, ect. DID use a big fluffy pillow to rest my arm on while in the car though.

13.How active were you, ie. walking around?
Walked around and got active very quickly, didnít hold me back much at all. Although, I cant hold many items in my left hand because they are too heavy, too high above my head, ect.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?
Big fluffy pillow for the car, sling for the grocery store to warn people, ADVIL, didnít use ice, I had a heating pad for my back to loosen my muscles in my back/shoulder blade area, and try to get back to eating as normal and as quickly as possible. Stretch your arm, push yourself only a little bit at a time to regain ROM. The longer you baby those motions, the harder it will be to recover. BTW- I am not going to PT, surgeon says I wonít/donít need it.

Happy healing to everyone, hope this helps!
Jocelyn

Moxie
04-21-2011, 09:31 AM
Hi, I am a 32 y/o female. Historically, fit, healthy, and athlete in past (college soccer and competitive road cycling for 4 years). I work in public health research and policy for the last 5 years have primarily worked at a desk and computer/phone 40-50 hours a week. In July of 2009 I started to notice weakness and tingling in my left hand followed by lack of sensation and cold fingers. I assumed it was from my position on my road bike and from all the time on a bike and at a desk but kept getting worse after stopping the bike and ultimately taking a leave from work. My primary care sent me to a neurologist. The neurologist ran tests- MRI and CT of head, nerve conduction study, and sleep study and diagnosed me with "carpal tunnel" and noted degeneration in cervical spine and recommended cyybalta for nerve pain and physical therapy. By November I felt some improvement from physical therapy but had already discontinued many activities. In December of 2009 I woke in the middle of the night with extreme swelling and pain in my left arm (left arm had completely blown up! couldn't see fingers) - ER found large clot in neck and arm (subclavian vein main clot) and I was put on blood thinners. After almost a year of treating clots and then trying to figure out WHY I got clot, found out about TOS. Was diagnosed with venous TOS with neurogenic as secondary. Venogram in August of 2010 confirmed this - showed blood flow slow to a trickle when arm abducted away from body. Did lots of research, tried physical therapy, massage, chiropractic, rolfing (which helped the most of any of the physical modalities I tried), postural reeducation, alexander technique, and feldenkrais. Consulted as many people as I could in ALL disciplines - not just biomedical-model-only practioners (ie. MD world) but holistic as well - doctor of osteopath (DO), hematologists (3), neurologists (2), physiatrist (1), PT's (2), vascular surgeons (2), cardio-thoracic surgeons (3)- finally, as symptoms were not improving even after clot dissolved, chose to have surgery at MGH with Dr. Dean Donahue.

Properative diagnosis: Left venous and neurogenic thoracic outlet
Name of Operation: Left paraclavicular first rib resection with anterior scalenectomy, brachial plexus neuroplasty and subclavian venoplasty.




1.How was it right after surgery? Day of? The first couple days?
It took just under 5 hours and was done via a supraclavicular approach. When I woke in recovery I didn't have "pain" per se because everything was numb and swollen but I did feel like I had just been run over by a mac truck. I'm not going to lie, it sucked. But, it was nothing like the pain I thought it was going to be. Waking up after surgery and actually being able to feel my fingers was worth all the other stuff (catheter and all!). Right after surgery I couldn't feel anything in my shoulder/chest/neck - all numb - but I did have difficulty taking deep breaths and felt sharp pains deep in my chest and shoulder. When I got to the cardio-thoracic floor from recovery I was feeling pretty out of it (surgery was from 8am-1pm) but by that evening I was very, very sick and for about 8 hours I couldn't stop vomitting (from the pain medicine - dilaudin) Because of the intense vomiting they took me off the narcotic and put me on high dose motrin for 12 hours - that helped and by day 3 I was able to go to the bathroom on my own (and go #2!! yeah!! Having a bowel movement was actually pretty stressful - all they talk about in the hospital re: when you can go home is going poop on your own!!) getting ready to be discharged- barely felt anything except for numbness and heaviness in the shoulder and waves of cramping deep inside my chest (lidocaine patch was key to helping relax these contractions). Was suprised that I could be okay on Motrin after all that! But, seriously, motrin was much better for me than the narcotic. Also, lidocaine patch put on shoulder was best pain management tool. Highly recommend these patches!!! Very expensive if you don't hae insurance coverage for these patches post hospital stay so try to get a few extra while in hospital or at least go home with one. Unfortunately, because of all that vomitting I popped a bleb (small hole in lung common after surgery) and routine chest X-ray showed a small pnemothorax (air trapped around lung) which developed into a tension pnemothorax (very dangerous if not treated asap) and I had to have a chest tube inserted on day 4 to drain the air (the bulb drain was not effective) and was hooked up to wall suction for 2 more days. The chest tube in my side for 3 days was honestly the worst pain I have ever felt. As soon as it came out I felt like a million bucks.

2.What was it was like when you left the hospital?
I was discharged 7 days after the operation (extra 4 days for tension pneumothorax and chest tube). Before leaving the hospital I went to pathology and collected my first rib (I had requested prior to surgery that I be able to keep my rib) - it came in a jar with formaldehyde Got a tour of the pathology lab. Mom and I took a taxi home (BAD idea) - any bouncing or jostling was really bothersome. Had to remind taxi driver that I was recovering from major surgery. In hindsight, wouldn't have taken a taxi but we were in downtown Boston and it seemed easier. When I got home, I was suprised at how easy I was able to move about and how little help I needed. First day home I went on a 30 minute walk and it felt great to breathe non-hopsital air and move my feet. Lidocaine patches every 24 hours were a god send for chest cramping and pain. A note that it was really challenging for me to

3.What was it like getting around?
Started daily walks the day I got home. First couple were a challenge re: balance and speed - felt like everyone else around me was flying by! By day 4 at home I was doing 1 hour walks no problem - slow and steady and with a buddy.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
Right away I was able to bathe by myself and go to the bathroom alone but I needed help getting my shirt/bra on and off. Arm was very limited re: range of motion and couldn't lift it above my shoulder. Was able to feed myself but needed help with laundry, dog walking, opening or twisting open anything. Also, neck range of motion was very limited for first week.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I have two incisions - one above and one below the clavicle. I needed help changing and cleaning my incisions for the fist week. But was able to wash and pat dry solo when in the shower. I also needed help applying lidocaine patch (highly recommend!!!).

6.How did you manage pain? Did you need ice a lot?
I was in a lot of discomfort for the first 3 days home and took the pain medicine every 4 hours - started stretching it out to 6 hours and then 8 as days went on. By day 5 home I needed pain medicine mostly at night to help me sleep - discomfort was primarily the incisions themselves and deep inside my chest and shoulder. Used lidocaine patches at night as well. I used ice (frozen peas) at night especially to take ht edge off the inflamation. I was very, very swollen and couldn't take advil bc I am on blood thinners. Just a little ice helped a lot to get my body to relax and took the edge off the swelling and helped me sleep.

7.What was it like the first couple of days?
(see above)

8.The first week?
THe first week was actually not as bad as I thought it would be - I couldn't believe I was walking outside everyday - but honeslty that helped me mentally recover from what my body had just gone through. Sleeping was ROUGH!! Needed lots of pillows. Woke up several times a night to change position. Couldn't sleep on back or tummy.

9.The second week?
Much less pain medicine, ice as needed, daily walks, started to get much more range of motion in arm and could lift a glass of water. Still waking up in the middle of night to change positions. Had to get up out of bed every night (around 3am) and take a motrin,walk and stretch for an hour or so, heat my shoulder, before I could fall back asleep.

10.a month post op?
Incisions still hurt - most painful week 3. Not able to wear a bra yet. No pain medicine. Motrin and heat. Heating pad, hot baths with epsom salts, stretching every 3 hours, moving positions, breathing exercises, all help keep symptoms in check and decrease pain and keep me moving. I felt worse week 5 and 6 then I did week 2-4 - I attribute that to coming off the pain medicine and the body starting to process the trauma of the surgery. Sleeping through the night - much better sleep as soon as I was able to start sleeping on my tummy. Limited to back and side at first because of ROM in neck but now tummy sleeping helps a lot with pain keeping pain in back and shoulder at bay.

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
NO public transportation until 4 weeks post op. Jostling is the WORST. Meals kept simple I could handle. Shopping was actually a good activity for me - supermarket that is - pushing cart around for 30 minutes felt good and was a good activity to get me feeling like a human again. Def. couldn't lift anything heavier than a glass of water or book for first 4 weeks. Driving still a challenge because of neck range of motion and turning wheel with affected arm. Chest strap on seat belt hurt so had to move out of way. At 7 weeks post op now I still try not to drive much - a short 2 mile trip every morning to park to walk dog is most I can handle. Oh, yes, the dog! The hardest part! And, walking dog is big no-no - DO NOT use a leash - find a place where they can run free and then hopefully call them back into car on own...but, my dog is just over a year old and is a 75lb golden doodle.

13.How active were you, ie. walking around?
I was walking about in the hospital by day 3 and then every day after that once home. Walking was a challenge at first re: balance and breathing, but it really, really helped my mental and physical recovery (especially since I was in the hospital so long in a bad position in bed). At 7 weeks post op I am walking 1-3 miles a day (depending on how breathing is going), doing range of motion stretches, and just started to use an indoor bicycle (sitting upright). Prior to TOS I was a competative athlete - soccer player in college, competative road and mountain cyclist, avid yoga class goer, and general fitness enthusiast. While my urge is to get more active right away, I am reformed, and am trying to listen to my body and it is telling me to take it SLOW lest I end up with bad biomechanics and scar tissue from pushing it too soon. I constantly have to remind myself that this is going to be a long process of healing - my arm reminds me - it only lets me do so much - can lift more with my arm now, larger glasses of water ;), but still no weight bearing.

***My Special Notes/Suggestions****
1. Narcotics really constipate you and it was very difficult to "bear down" to push: 1) because of your weakened/turned off diaphram muscles and 2)I was also told to be careful about pushing too hard or coughing too card b/c of sensitive surgical area - especially after I had vomitted too hard and actually caused a pnemothorax (collapsed lung) from the effort/"violence" of the heaving. I highly recommend getting on a daily dose of metamucil when you leave the hospital for at least as long as you take the narcotics and even longer (I still do at 7 weeks post op) because of all the crap in your system from surgery- takes A LONG time for your body to get rid of all the residual from the surgery drugs.
2. Chest X-ray and Collapsed lung. Make sure you talk to your surgeon about the potential for a collapsed lung, how they will detect it post-op/make sure you aren't discharged with potential for collapse (numerous x-rays should be done in my opinion - oxygen rate is not enough - I never went lower than 97 oxygen rate- and that was at the critical, we gotta get this chest tube in now at her bedside stat moment.
3. Venogram. If you have 1) had an UEDVT (upper extremity DVt/blood clot in upper body) 2)been diagnosed with venous TOS or suspect it and/or 3)someone has recommended surgery for venous TOS, you should get a venogram done. It is relatively low risk and in my opinion one of the best diagnostic tests for determining whether you have compression that is biomechanical, postural, or from scaring - plus it is a great visual picture of what is going on not just at a moment in time, but during movement, it helped me tremendously to visualize what was happening in my veins.


I am 7 weeks post op as of this posting. Happy to share info with anyone but typing is still a struggle so please feel free to ask specific questions or send me a message and we can talk via phone if helpful. I had a hard time deciding to do this surgery - I even had to reschedule it after freaking out the night before first try - it was not an easy decision to come by - especially with the lack of evidence and long term outcomes re: TOS. PLus all the complicating factors....blood clots.... So, I feel you if you are sitting out there reading this and are trying to make your own decision about surgery. Please, you aren't alone!! Reach out - we are all very unique and individual re; our specific anatomy (something I learned along the way) and not one of us is the same re: tx. BUT there are a lot of similarities and we have all had a lot of experience knocking on doors and doing research. Good luck!!!

winic1
04-21-2011, 01:29 PM
Moxie, you mention Boston. Was this Mass G and Dr. Donahue?

Moxie
04-22-2011, 07:47 AM
Moxie, you mention Boston. Was this Mass G and Dr. Donahue?

Yes. Dr. Dean Donahue at MGH in Boston.

winic1
04-24-2011, 06:48 PM
How long would any of you suggest before taking a 150 mile drive home? I figure after surgery, we would stay in Boston for a week or so before attempting to come home. (Ater having collarbone pinned, 12 mile drive home the next day wasn't the greatest.) I won't be driving, hubby will, of course. Is a week going to be reasonable, or should we plan on more like 2 weeks, or more?

KBlueDot
04-29-2011, 10:12 AM
Hey everyone. I just had a rib resection after multiple blood clots in my left subclavian-axillary vein. I had a classic case of Venous TOS, or Paget-Schroetter as they say. I got it from 20 years of dance and gymnastics, basically. I had a thrombolysis last year and was on blood thinners (Arixtra, those lovely pink needlesÖ) two separate times for the clots in my shoulder. I finally found a great surgeon in New York and had my first rib removed just over two weeks ago. It wasnít bad at all for me, the only lingering pain is underneath my upper arm and around the incision. It's definitely worth it for no more blood clots! Hopefully this fixes the problem completely. Good luck to everyone having this operation and make sure you have a great surgeon. Mine was awesome, I'd be happy to recommend.

1.How was it right after surgery? Day of? The first couple days?

When I woke up (still in the OR) I was in a huge amount of pain right away, from the front of my chest all the way around to the back of my shoulder blade. Felt like I was being stabbed right through! I was surprised by this, since everyone I had talked to about surgery said that I probably wouldnít wake up in pain. When I woke up, I was really weird from the anesthesia and I didnít even realize the surgery was over! That was crazy, I had never been under anesthesia before. It really was over before I knew it. The only way I knew that the surgery was over was by the pain in my shoulder. In recovery, I was still in a lot of pain and they gave me morphine and fentanyl, as well as continuous anti-anxiety medication. Then I got hives from the pressure of the blood pressure cuffs and all that, so they gave me benadryl. I was uncomfortable at first, but my pain was controlled right away.

The entire surgery was about 3 hours. I stayed in recovery from about 12 noon to 8:30 pm and was released the same day. They performed one chest x-ray right after surgery (I didnít have to get up for it). I was able to get up and go to the bathroom around late afternoon. Could get dressed on my own. I did not have a tube for drainage or a sling. My incision was under my left arm, about three inches long. It was covered up with steri strips and gauze.

2.What was it was like when you left the hospital?

Parents and boyfriend helped me walk outside and into the car. Was able to walk no problem. Left with prescription for percocet 5 mg. I was very nauseous from the anesthesia, and the percocet made it much worse. Do yourself a favor - take as FEW painkillers as possible if you think thereís any possible you may throw up. It HURTS!


3.What was it like getting around?

I didnít try to get around much on my own, mostly rested on the couch. Mom, Dad and boyfriend took great care of me. After a day or two, I was able to take short trips to the store or wherever with Mom.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?

Showering and bathing was definitely the hardest part. I took baths for the first few days and avoided washing my hair to keep the incision from getting wet. After two or three days, I was able to wash my hair in the bath - in a really strange, twisted, sort of one-handed way J. After four or five I was showering on my own without too many restrictions.


5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?

Incision was just under my left arm, about three inches long. It stayed bandaged up for about five days until it fell off. When I first saw my incision it didnít look bad at all, stitches were dissolving and it looked very neat. It did look swollen, though, but it started to go down in a few more days - the swelling was just from the skin being pulled together.

6.How did you manage pain? Did you need ice a lot?

No ice, I took the percocet as prescribed for a day but I got very sick and threw up (again, very painful, avoid throwing up at all costs!!). I stopped taking them and switched to vicodin 5 mg and continued for a week and a few days. No ice, I did use heating packs immediately after in the hospital as well as afterwards at home.

7.What was it like the first couple of days?

Couch, movies, sick from pills, bearable pain. The first night was tough sleeping, I didnít sleep much at all. The next few nights I took Tylenol PM for both pain and sleep help and I was able to sleep much better. After about a week, I was able to sleep on the side that was operated on.

8.The first week?

At the beginning, I was still feeling sick from the anesthesia and weak from the overall experience. I gained strength throughout the first week and by the end, I had made significant progress.

9.The second week?

At the start of the second week I was able to stop taking the vicodin and I was able to start driving. Driving actually felt so much better after the surgery because before, the arm was affected with the symptoms of TOS that made stretching my arm forward really uncomfortable.

10.a month post op?
Not there yet!

11.two months post op? etc.?
Ö.

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?

Luckily I had my parents and boyfriend to help me with all the above. No public transportation, I was able to drive about a week after surgery.

13.How active were you, ie. walking around?

My surgery was on a Friday and by Sunday, I was up and around for about an hour at a time each day going to stores, etc. I tried to do something each day, which really helped - getting up and moving makes you feel human again, so do what you can. Definitely at least get outside in the fresh air.
I had my first follow-up appt. yesterday, and my surgeon told me I am recovering remarkably well for this operation. They were very pleased with my progress and agreed that I can begin getting back into very slow & gradual dance training (legs only!).

vilim
05-20-2011, 11:35 AM
Well done! having read some bits on this website, it seemss the the post operative recovery can beinfluenced by what sort of TOS and rib resection you had and by the level of fitness before the op

I am 7 weeks post op for a rib resection and scalenectomy and its a bit of a roller coaster. I only had 10 days from initial symptom & diagnosis to the actual operation as mine was arterial and had already had a blood clot in my hand.
It was a whirlwind of tests, specialists and second opinions and almost wish I had more time before the operation to prepare mentally. I went from being quite fit (still need to shed a few kilos!)with a cold, numb finger to the operation and completely imoble and that was the real shock.

The operation was abouto 4.5 hours and the first few days after the op were agony with shoulder pain and breathing problems. My diaphram had come right up my chest due to nerve paralysis adn was extremely uncomfortable. I take my hat off to all those people who were discharged after one or two nights, I was in hospital for over a week and had physio twice a day from day 2. I was on morphine for 3 days which gave me migraines and for the first 2 weeks after the operation i was unable to sleep for longer than 2 hours at a stretch.

Things do improve, I have been lucky with complete home help ( we live in Singapore) and so I think my recovery has speeded up as I have been able to rest as much as I want.

7 weeks down the track, still having pain in my elbow and this last week periodic coldness of my middle finger (this is not painful just irritating). It seems that the pec muscle may be pinching as this is very tight and painful. I have been back to my surgeon who has put me on muscle relaxants to see if it is truly the cause ( I think this is why, Singaporean surgeons are great but not at explaining things).

I have begun to exercise again, managed 20 mins on the runner today and am feeling very chuffed with myself.

My scar has healed really well, if anyone is contemplating the surgery its worth asking if a plastic surgeon can close up. Its not much cost in the relative scheme of things and because of the location of the surgery lots of insurance companies will pay for it.

I have been shocked by the total cost of the whole procedure and thank god that we had great medical over. So far my bill has come to approx SGD $60,000 ($48,000USD aprrox) and that is without any of the physio which they estimate for another $5000SGD.

I had Arterial TOS so there was no option to not have surgery but I have realised I will rpobably take the full 3-6 months to fully recover

Hi, Can I check with u which surgeons performed the surgery for you? I live in Singapore and was diagnosed with TOS for 2yrs. I have yet to go for the first rib removal surgery as I am indecisive of its outcome. Thanks.

TOSPITA
05-23-2011, 03:10 PM
Hi,

Last Tuesday I had a first rib resection, scalenectomy and pectoralis minor tenotomy. I have bilateral vascular and neurogenic TOS and Pectoralis Minor Syndrome. I have arterial and venous impingement on both sides, as well as severe brachial plexus lesions. Four weeks prior to the surgery I was given Neurontin to alleviate some of the nerve tremors. I was discharged from the hospital a little over 48 hours after surgery. I refrained from using my dilaudid (similar to morphine) drip 24 hours post op, as I did not like the headaches and nausea it caused. Since then I have been taking my neurontin faithfully 3 times per day, as well as a 5mg oxycodone as needed, but no more than 3 per day . I also take Fiorcet as needed for my headaches... which have dramatically declined in frequency and duration over the last week.

Since my return home, I have noticed marked swelling of the vessels traveling up my neck from the clavicle incision. My surgeon called this afternoon to check on me, and indicated that the vessels were unusually swollen as he needed to separate the vein. I am not sure quite what that means, but I will find out Friday at my post op visit. He was also upset to hear that I had not begun my PT or OT regime, as the surgical fellow assigned to my unusual case did not write the necessary prescriptions. Has anyone begun PT and/or OT a week post op? I am doing well otherwise, and now realize how much pain I have been in for so long, as my left arm (the surgery site) is less painful than my right arm. Go figure.

I would love to hear of anyone else's stories.

pixified
05-23-2011, 05:21 PM
Sounds like things are improving for you, TOSPITA. That's always good to hear! Do you mind if I ask who your surgeon is and where you had the procedure performed?

I haven't had the surgery yet, but one of the docs I have met with routinely prescribes a PT course to start 2 weeks after surgery.

TOSPITA
05-23-2011, 07:43 PM
I had my surgery at UPMC Mercy Hospital in Pittsburgh, Pennsylvania. My Surgeon's name is Dr. Jae Sung Cho. He is an associate professor of Vascular Surgery at Pitt Medical School, and a member of the UPMC vascular surgery team. He is an exceptional technical surgeon, and was very highly recommended from various doctors at Mayo, JHU, etc.

If you are considering surgery, please be sure that you have gone through every diagnostic test to ensure exactly what the diagnosis is, and the best way to treat it.... and get a very thorough seond and/or third opinion.

pixified
05-24-2011, 09:33 PM
Yeah, I've seen 3 docs and had all the tests for TOS. What test did Dr. Cho use to diagnose the pec minor syndrome?

ATOS007
05-25-2011, 04:52 AM
Hi. Thanks for all the info. I am going for first rib removal leftside on 13 June. This site has helped me a great deal and I am going to try aff the healpful tips. Any more tips would be greatly appreciated. Regards

TOSPITA
05-25-2011, 06:49 AM
There are three tests that were used to diagnose the pec minor issue. The first was a simple push test on the nerve bundle behind the pec minor tendon. The second is a comparative analysis of a specific muscle response and Erb's point (over time) of EMG tests and NCV tests. the third is a higly specific Doppler test that shows axillaryvein and artery impingement at that location.

My tests over 30 months included multiple EEG, EMG/NCV, Doppler flow symmetry, Doppler ultrasound, MRI/MRA of the bilateral bracial plexus, multiple MR of my spine and brain, as well as a physical therapy evaluation. I should note that was never a physical therapy candidate. I am a former national level swimmer, who suffered severe spinal fractures in 1996 and 2001, thus leading to a bad mix of ingredients for TOS

kyoun1e
06-14-2011, 10:53 AM
Folks,

Very interesting and valuable read.

While it seems like recovery depends on the individual and their specific circumstances, I'm wondering what guidelines most of you were given in terms of recovery and timing for the following:

1. Rest -- I would imagine your doctor's ordered you to do absolutely nothing for some period of time. Couple weeks?

2. Stretching / Manual Therapy -- At what point did you start doing range of motion movements? Have somebody execute manual therapy?

3. Strengthening -- At what point was it "safe" to start doing strengthening work to start rehabing the injury? After a month? Six weeks? Two months?

4. Back To Activities As Normal -- This would mean, whatever you were doing prior to the condition (i.e. riding your bike, playing tennis, etc.) you can now do safely. Three months post op? Six months?

Trying to get a general gauge in the case I have to have surgery myself. I need to fit this into my life so it has the least impact on my personal and professional situations.

Thanks in advance.

KY

BexUK
06-14-2011, 11:04 AM
Folks,

Very interesting and valuable read.

While it seems like recovery depends on the individual and their specific circumstances, I'm wondering what guidelines most of you were given in terms of recovery and timing for the following:

1. Rest -- I would imagine your doctor's ordered you to do absolutely nothing for some period of time. Couple weeks?

2. Stretching / Manual Therapy -- At what point did you start doing range of motion movements? Have somebody execute manual therapy?

3. Strengthening -- At what point was it "safe" to start doing strengthening work to start rehabing the injury? After a month? Six weeks? Two months?

4. Back To Activities As Normal -- This would mean, whatever you were doing prior to the condition (i.e. riding your bike, playing tennis, etc.) you can now do safely. Three months post op? Six months?

Trying to get a general gauge in the case I have to have surgery myself. I need to fit this into my life so it has the least impact on my personal and professional situations.

Thanks in advance.

KY

Hi there :)
I can let you know what my doctor told me to do, although I'm sure doctors and guidelines vary from place to place...

1) I didn't get told specifically to rest, although I was told that I would probably feel quite out of it for a couple of weeks. They said that it really varies from person to person how much the op impacts on you - I was lucky and recovered quickly but I've read about a lot of people who have had taken a while to get back on their feet.

2) I saw the physiotherapist just before I was discharged from hospital (around 36h after the op) and she gave me exercises for my shoulder to do as often and soon as possible, to prevent it 'freezing'. It mostly consisted of lifting my arm and stretching my neck to improve the range of motion as it was very stiff to start with.

3) After a few weeks I was sent to a physiotherapist who carried on with getting my shoulder strength back and helping me with my range of motion. I saw her once a week for around 6 weeks I think, and she advised me that I could go to the gym and do light exercises as soon as I felt ready.

4) This again, I think, must vary a lot depending on exactly what op you have/any complications and prior health etc, I got back to uni after about 2.5 weeks (walking the 3-4 miles there and back!) and the gym a couple of weeks after this. I built up slowly as I didn't want to overdo it. I would say it took at least 3-4 months before I could do pretty much everything again, although I got some problems with muscle cramping after prolonged standing for 6 months or so.

Hope this is helpful :)

Bex

kyoun1e
06-14-2011, 11:25 AM
Hi there :)
I can let you know what my doctor told me to do, although I'm sure doctors and guidelines vary from place to place...

1) I didn't get told specifically to rest, although I was told that I would probably feel quite out of it for a couple of weeks. They said that it really varies from person to person how much the op impacts on you - I was lucky and recovered quickly but I've read about a lot of people who have had taken a while to get back on their feet.

2) I saw the physiotherapist just before I was discharged from hospital (around 36h after the op) and she gave me exercises for my shoulder to do as often and soon as possible, to prevent it 'freezing'. It mostly consisted of lifting my arm and stretching my neck to improve the range of motion as it was very stiff to start with.

3) After a few weeks I was sent to a physiotherapist who carried on with getting my shoulder strength back and helping me with my range of motion. I saw her once a week for around 6 weeks I think, and she advised me that I could go to the gym and do light exercises as soon as I felt ready.

4) This again, I think, must vary a lot depending on exactly what op you have/any complications and prior health etc, I got back to uni after about 2.5 weeks (walking the 3-4 miles there and back!) and the gym a couple of weeks after this. I built up slowly as I didn't want to overdo it. I would say it took at least 3-4 months before I could do pretty much everything again, although I got some problems with muscle cramping after prolonged standing for 6 months or so.

Hope this is helpful :)

Bex

Bex,

Very helpful.

I read somewhere that you consider yourself a "gym bunny" so I am definitely interested in your recovery details. I too am a gym bunny and consider myself to be in great shape. I'm hoping this beneifts me if I need to go the surgical route.

I was told that I don't have any rib issues and this would be more of a scalenectonomy along with some potential subclavian artery repair work (maybe).

Two weeks of complete rest, with PT starting at six weeks, and then full recovery by 3 to 4 months sounds reasonable. If I need this done, I was thinking of doing it post summer/early fall. With any luck, that would have me on the rebound after new years.

Thanks much!

KY

P.S. Bex...tried sending you a PM...couldn't for some reason.

BexUK
06-14-2011, 11:35 AM
Bex,

Very helpful.

I read somewhere that you consider yourself a "gym bunny" so I am definitely interested in your recovery details. I too am a gym bunny and consider myself to be in great shape. I'm hoping this beneifts me if I need to go the surgical route.

I was told that I don't have any rib issues and this would be more of a scalenectonomy along with some potential subclavian artery repair work (maybe).

Two weeks of complete rest, with PT starting at six weeks, and then full recovery by 3 to 4 months sounds reasonable. If I need this done, I was thinking of doing it post summer/early fall. With any luck, that would have me on the rebound after new years.

Thanks much!

KY

P.S. Bex...tried sending you a PM...couldn't for some reason.

Hi KY

I think good general fitness definitely makes a big difference to recovering, guess it means you have more reserves... I'm now 10 months post op and have been back to my normal fitness routine for a good number of months (including gym, judo, etc). I have numbness on that side of my chest and on my shoulder which I think is permanent, but it hasn't made any difference to my general fitness or ability to do anything.

Out of interest, I posted some photos of my scar on this site (paste "thread148013.html")

Like I mentioned on that thread - it actually is a bit wider and whiter now, but almost completely flat :)

Bex

PS I'm not sure why you couldn't PM - I've added you as a friend so hopefully you'll be able to now.

hellothere
06-14-2011, 08:33 PM
Hi KY

I think good general fitness definitely makes a big difference to recovering, guess it means you have more reserves... I'm now 10 months post op and have been back to my normal fitness routine for a good number of months (including gym, judo, etc). I have numbness on that side of my chest and on my shoulder which I think is permanent, but it hasn't made any difference to my general fitness or ability to do anything.

Out of interest, I posted some photos of my scar on this site (paste "thread148013.html")

Like I mentioned on that thread - it actually is a bit wider and whiter now, but almost completely flat :)

Bex


PS I'm not sure why you couldn't PM - I've added you as a friend so hopefully you'll be able to now.

Someone with a good result from the surgery.. Im very glad to hear it. :)

I think you are very right though general fitness and prior health and age would have alot to do with how well you recover. Also the severity of the complications awswell.

I thinking people with more mild symptoms will have a much better result. So that is making me feel alot more positive about my situation. I also spend alot of time being active and working out and i really dont want to give that up.

Sheri_TOS
06-14-2011, 09:38 PM
Someone with a good result from the surgery.. Im very glad to hear it. :)

I think you are very right though general fitness and prior health and age would have alot to do with how well you recover. Also the severity of the complications awswell.

I thinking people with more mild symptoms will have a much better result. So that is making me feel alot more positive about my situation. I also spend alot of time being active and working out and i really dont want to give that up.

KY -

I also had a positive surgical result. I am going on 7 1/2 years being symptom free on that side. I can do a lot with the hand and arm now that I couldn't do pre-surgery. I returned to my workout routine at some point after the surgery. I was considered a severe case at diagnosis (10 months post injury) with a positive EMG showing nerve loss and opted for surgery 9 months later when the situation was cascading down. I literally couldn't use my hand by the time I went for surgery. The muscles in the hand and forearm had atrophied. Doctors can not explain why/how the muscles recovered as well as they did. It took a good couple of years before the hand completely recovered. Now you couldn't even tell that I had a problem except on EMG where the nerves show some sort of regrowth.

I was just diagnosed TOS on the other side so I've returned. I hope to manage this through conservative treatment as the surgery and rehab is hard. If I can't control the symptoms, I will consider surgery sooner than I did the last time hoping for a fairly good outcome.

seashell86
06-15-2011, 09:24 AM
After tons of research I was happy to finally find this thread with other people's experience with TOS and decompression surgery. Therefore I thought I would add my experiences so far to help others just like this site did for me...

This whole thing started about 1 month ago when I found out I had a DVT (clot) in my right arm, after a 3hr clot busting procedure and balloon angioplastly I was diagnosed with Venous TOS/Paget Schroetter Syndrome. I saw a specialist at NYU and scheduled my 1st rib resection surgery.
I had surgery 6 days ago...June 9th

After surgery I didn't feel much of anything my shoulder/upper arm was very heavy feeling and numb. My chest also felt heavy due to my collapsed lung. I didn't have any drains just a chest tube to help re-inflate my lung. The tube was sewn right into my incision which was under my armpit. After time, I used the morphine pump for what pain I could feel to keep me comfortable. It was hard to find a comfortable spot to lay I needed to be propped up.

I didn't get much rest in the hospital due to noisy roomates (I was in a 6-bed unit at first to be monitored) and I had a few bouts of nausea/dizziness when they tried to switch me to vicodin. I stayed in the hospital (until Sun morning) a day longer than expected due to air left in lung after they removed the chest tube.

The 2hr ride home was tolerable, but the bumps were not fun! I have only been home for a few days but am doing pretty well. Minimal pain...more discomfort than anything. I have only taken a bath, and I can dress myself in anything that buttons or than I can pull up for the bottom. Nothing over my head. I have been out of the house a little bit each day, and moving around on my own pretty well.

My initial bandages were removed this morning I have a 2-3 inch scar under my armpit, my upper arm/shoulder area are still numb and very heavy feeling. It is hard for me to move my upper arm much, my range of motion isin't very good at the moment. I will be continuing with my exercises to help me with that. I was just told to do the "walking up the wall" exercise...

So for not even a week after surgery, I am feeling much better than I thought I would. I have just been taking Motrin during the day and 1 vicodin at night to help me be more comfortable. I am really thankful to be moving around without major limitations and pain.
I hope sharing my experience helps, reading others sure has helped me! :)

seashell86
06-15-2011, 09:30 AM
I was wondering how long people have experienced numbess for after surgery? My shoulder/upperarm area is still numb (6 days after surgery)....

Ther4peuticH3at
08-15-2011, 01:36 PM
Hi, I recently underwent a first rib resection and a partial scalanectomy. I was diagnosed with Paget Schroetter syndrome back in April (about 5 months ago). Initially I spent 4 or 5 days in the ICU on blood thinners and clot busters. I was meant to have the first rib resection shortly after that, but instead elected to take a couple more courses at my university before undergoing the surgery.

The surgery was on April 13th, about 4.5 weeks ago, and I'm pretty much back to normal. I've been working out again for a little over a week now, which is huge for me since I had gotten quite a bit out of shape over the last 5 months (by my standards at least, usually over the summer I spend about 1 - 2 hours a day working out). I was back to work a little over a week after the surgery; it probably could have been sooner, but my mom wasn't having that.

I honestly experience NO real pain. Some muscle soreness sure, aches and pains here and there, but nothing to write home about. I had an AMAZING surgeon. That's about the gist of it. I'll spell out the details below, for anyone who's interested.

The Long Story
Back in April, I was doing a workout that I've probably done a hundred times before when my arm just started to feel like it was going to explode. My friend who was there with me, doing the very same workout was a bit freaked out at how visibly swollen my arm had gotten. The veins were hard and bulging in a way that neither of us had ever seen. I tried to push through the rest of the workout, but the arm was just too discerning.

That night we went out, had a bunch of fun, I had almost forgotten about the incident with my arm. Then over the next couple days, I noticed I was beginning to have severe pain whenever I tried to move my arm. There was massive swelling throughout the arm and into the chest. Before long I could barely move the arm at all. I began seeing doctors a few days later and no one was sure what was going on. Muscle tear was what I kept hearing, but it just didn't really add up for me. I kept explaining that it had felt like blood was going into the arm and not coming out.

Eventually, I got an ultrasound. There was about 15cm of clot in my right subclavian. I was rushed to the ICU for an emergency procedure. I spent the next 4 days in bed, not allowed to move AT ALL. When it was over, I felt a lot better. I had regained about 60% of my range of motion (ROM) by the time I had left the hospital. A couple days later I had no mobility problems what-so-ever in my arm. At that point things felt pretty normal, but I only had to stress the arm just a little bit to be reminded that there was still a problem. I would need surgery to decompress (or releive pressure on) the blood vessel.

I spent the next three months on blood thinners, taking it easy. No strenuous activities, no alcohol (okay, I'm in college, so maybe a little alcohol). About a week before surgery I caught an annoying cold. By the date of the surgery I was just getting over it. Still quite a bit of drainage, and some sinus issues. A bit worried about that..

I went in for surgery, got prepped. When they rolled me into the OR, I was expecting to get a chance to talk to the Doc one more time before the surgery. I remember feeling really anxious, then the nurse asks"How're those drugs treatin you?", I go "What drugs??".. The next thing I know, I'm waking up 4 hours later in recovery. No real pain besides a soar throat from the chest tube. I could feel the pressure from the ice and bandages on my side, but for the most part it was all beautifully numb.

I do have to say that, despite virtually no real pain resulting from this surgery, there were a few things worth mentioning. 1. Blowing your nose, will hurt. 2. Coughing will feel like a thousand microscopic BOMBS going off in your chest. 3. In the moments before sneezing you may consider whether or not it would be easier to just shoot yourself in the face before the sneeze actually happens... SNEEZES WERE THE WORST. None of these things were a problem about 2.5 weeks after surgery.

During surgery they had inserted an anesthetic delivery system directly into the incision. It was called Symbios, and it pumped a steady stream of wonderful into my side for a whole three days after the surgery. I stayed in the hospital over night after the surgery, every one was so nice. I had about 70% ROM after about 5 hours after surgery. By the time I was released the next day, I had pretty much 100% ROM.

They prescribed me some Percocet, and I had like 3/4 a bottle of Vicodin left from when my arm had first started acting up. Fortunately though, the Symbios kept me pain free over the next three days. At the end of the third day, in apprehension of some overwhelming pain to befall me once the Symbios had been used up, I took half my dosage of Percocet. Six hours later, I woke up so high I didn't know where I was. I spent the rest of the day tripping in my bed. When I finally came to my senses and the drugs had worn off, there was no actual pain to speak of. So I tossed the Percocet.

With no real pain, I didn't really need the drugs. I had been well enough to go out to the mall and hang out with family a day after surgery, but I think emotionally I was a bit worn out. I first five days after surgery taking it easy. Then I started getting back to hanging out with friends. On a day where I expecting to be out and about, I'd take a precautionary Vicodin (didn't want to be 30 miles away from home and realize I should have taken one). After about 2 weeks after surgery, the precautionary Vicodin wasn't even necessary.

I had been working again since 1.5 weeks after surgery. 3 weeks after surgery, I had been given the go ahead to start working out again, and I was back to my normal routines.

Working out again was scary at first. It was hard to know how to approach the arm. How much pain was too much? How much activity would be pushing it too far? But, you figure it out. Right now, I'm just under 4 weeks post OP, and I'm doing push ups and pull ups and whatever else I feel like doing. The only real limitation is how out of shape I've gotten. I'm probably 8 pounds heavier than I was at this point last year, but I plan to take care of that in a month or so.

On a side note, after beginning to work out again, I noticed that a certain muscle on my right side wasn't flexing (as in, when I go to use it, nothing happens). It's called the serratus anterior, I expect there may have been some nerve damage resulting from the surgery.. to be expected. Nerves heal, so I'm being patient with it at the moment. There was some numbness in my inner arm and of course near the incision after the surgery. The sensation in my inner arm FELT more like hyper sensitivity, it would just feel like my t shirts were rubbing the skin raw. That has definitely subsided at this point; the incision area is still fairly numb, but that doesn't bother me at all.

Sorry about how long winded that ended up becoming. I just wanted to be thorough. I had been reading this forum a few months previous to my surgery and it really helped me to understand what I should expect from this kind of procedure. I'd like to thank each and every person who has shared their story here. It meant a lot to me.

Best wishes,
Len

SD38
09-21-2011, 05:00 PM
nidia was to have surgery on the 4th. Wonder how she's doing? Hopefully someone will post for her. Wishing her a speedy recovery!!
A.

'It is what it is'.......... LOVE IT!!!!!!!!!!!!!!! I say this all the time to myself and those concerned for me to try and remain relaxed about my whole TOS stuff. Ha ha;) Thanks for making me smile to myself, it all helps.
:) from SD38

SD38
09-23-2011, 02:40 AM
Hi KY

I think good general fitness definitely makes a big difference to recovering, guess it means you have more reserves... I'm now 10 months post op and have been back to my normal fitness routine for a good number of months (including gym, judo, etc). I have numbness on that side of my chest and on my shoulder which I think is permanent, but it hasn't made any difference to my general fitness or ability to do anything.

Out of interest, I posted some photos of my scar on this site (paste "thread148013.html")

Like I mentioned on that thread - it actually is a bit wider and whiter now, but almost completely flat :)

Bex

PS I'm not sure why you couldn't PM - I've added you as a friend so hopefully you'll be able to now.

Hi BexUk
Thanks for the scarring update. I'm currently 3 weeks post first rib excision with 2and1/2" scars above and below collarbone. At the mo they are still raised but redness is going down nicely and so is the initial swelling from the op. I just hope they flatten down, it looks abit Frankenstein esk.
Glad you are well and best wishes to ALL out there.TOS will not get the better of us!!!!!!!!!!!!! :grouphug:
From SD38

343v343
09-26-2011, 10:23 AM
Interesting stories about your respective surgeries thanks for sharing. Definitely a contrast from the statistics which is encouraging. Seems like the majority of the surgeries were warranted by blood flow and not so much neuro symptoms. Wondering if that is indicative of the good results. What sort of prognosis are you getting for potential failures. Doing pull ups and pushups is encouraging but how can you avoid scar tissue and other recurrence. My fear would be making my situation worse or undoing the surgery. If the surgery were to "fail" how soon would you know? What is the follow up work up to track complicstions or relapse ??

SD38
09-27-2011, 03:35 AM
Interesting stories about your respective surgeries thanks for sharing. Definitely a contrast from the statistics which is encouraging. Seems like the majority of the surgeries were warranted by blood flow and not so much neuro symptoms. Wondering if that is indicative of the good results. What sort of prognosis are you getting for potential failures. Doing pull ups and pushups is encouraging but how can you avoid scar tissue and other recurrence. My fear would be making my situation worse or undoing the surgery. If the surgery were to "fail" how soon would you know? What is the follow up work up to track complicstions or relapse ??

Hi 343v343,
I'm day 27 post first rib excision op now. Yes the surgery was predominately due to Venous occlusive disease as my previous neurological issues that accompanied it subsided on there own accord... after a year with the help of minimal use however.
At the moment I'm still coping with slight inflammation, muscle tightness/aches so can't really say how the turn out will be. I've had afew episodes where I feel like I've done too much moving around and felt as though I've pulled and taxed my muscles.:( I have a little hard lump at the base of my neck/just above my collarbone, at the edge of one of my scars - which feels achy/pulsey???.... so abit concerned about that.
Currently I'm just stretching to help with the muscle tightness of my SCM.
My follow up with my surgeon is in 3 weeks time so I am waiting until then before I undertake anything too exertive. I'm scared that if I return to normal activities ( not that I'm near to that stage yet) I will undo the surgery or cause damage around my scar tissue.
Anyway after my surgery follow up I will give an update.
SD38:winky:

khicks
10-19-2011, 12:43 PM
Hi, I was just diagnosed with TOS and a Cervical rib on my right side. I am contemplating surgery, but some of the stories on here are scary!

I am a professional musician and guitarist, and have experienced pain in my right forearm for over two years. It has made playing much more difficult, but not impossible. After 2 years of wrong diagnosis, (everyone assumed it was just tendonitis - and told me to quit playing for 6 months. which is impossible for a guy who plays 6 hours a day, and who's family relies on this as his income) a new doc finally found a cervical rib on that side, and diagnosed me with TOS. I have a nerve entrapment on that side and I will need to have the cervical rib and the first rib removed as well.

My life has been pure hell for the last 2 years, including trying different techniques playing to splints, medication, etc. The pain is certainly nerve related, as I had a negative EMG. My last 17 years have been dedicated to pursuing this music career (as a music teacher, performer, session man, etc. no illusions of 'fame' or anything.) including over $100,000 on a music degree. I suppose I would rather deal with this pain the rest of my life than lose my ability to play if the surgery goes wrong.

The stories about recovery scare me because there is a possibility that I will wake up from surgery and be worse off than before. The doc himself said there is prob a 5% chance of nicking a certain nerve, or making the pain while playing worse or even losing my ability to play altogether.

The doc said more than likely I will be able to start playing again within a few weeks of surgery. But there seems to be a lot of people here that have residual pain long after the surgery - worse than the initial pain that the surgery was for!

I am hoping that in two months I can play pain free - even from the surgery - but I am not seeing a lot of hope for this. My doc is a cardiovascular & thoracic surgeon - not the type of surgeon y'all were discussing.

Any help to ease my head would be appreciated! I desperately need to be pain free and want to continue a career that I have spent so much time and effort on. I don't want to have the surgery if I can't be pain free or there are NEW pains to deal with.

Thanks!

343v343
10-20-2011, 04:26 PM
Khicks - good luck. I completely relate and am worried like you. Personally the odds of successful surgery are enough to make me avoid it. If your doctor is saying 5% chance I'd hear that as more like 15% chance. Personally I have yet to read about someone who has had long term success going under the knife and I have read almost every site out there on TOS.

chroma
10-20-2011, 09:05 PM
Khicks - good luck. I completely relate and am worried like you. Personally the odds of successful surgery are enough to make me avoid it. If your doctor is saying 5% chance I'd hear that as more like 15% chance. Personally I have yet to read about someone who has had long term success going under the knife and I have read almost every site out there on TOS.
Do other readers of this group agree with 343v343 that there are no reported cases of long term success with TOS surgery?

343v343
10-20-2011, 09:12 PM
I should specify, that the results I was referring to was with neurological thoracic outlet syndrome only. I know, people have had success with vascular and arterial. It seems, that people with just ntos symptoms only do not fare very well. I have thought long and hard if I would ever go under the knife, and my gut tells me that my luck… I would just be worse off than when I started. I am committed to trying everything I possibly can to either live with my symptoms or try to improve upon them with stretching and strengthening where I can. Whatever decision you make, you have to live with indefinitely.

I am not trying to scare you or dissuade... It's a tough one.

chroma
10-20-2011, 09:27 PM
Thanks for the clarification. I had both ntos and atos symptoms. The ntos symptoms drastically declined for me after doing Egoscue postural exercises and putting more focus on good posture. I was also doing chiro at the same time, so that may have helped as well.

Circulation issues remain for me. Currently trying osteopathic manipulation. Just got started.

343v343
10-20-2011, 09:31 PM
It seems, from research that if you have three extra cervical ribÖ That your prognosis is significantly better. Also, it seems that those who find relief from surgery are those who have vascular involvement. If you are improving your neurological symptoms with stretching and exerciseÖ I think that is a good thing. If you want to have surgery to address the vascular issues, I think that is something to consider.

Jo*mar
10-20-2011, 09:36 PM
Hi, I was just diagnosed with TOS and a Cervical rib on my right side. I am contemplating surgery, but some of the stories on here are scary!

I am a professional musician and guitarist, and have experienced pain in my right forearm for over two years. It has made playing much more difficult, but not impossible. After 2 years of wrong diagnosis, (everyone assumed it was just tendonitis - and told me to quit playing for 6 months. which is impossible for a guy who plays 6 hours a day, and who's family relies on this as his income) a new doc finally found a cervical rib on that side, and diagnosed me with TOS. I have a nerve entrapment on that side and I will need to have the cervical rib and the first rib removed as well.

My life has been pure hell for the last 2 years, including trying different techniques playing to splints, medication, etc. The pain is certainly nerve related, as I had a negative EMG. My last 17 years have been dedicated to pursuing this music career (as a music teacher, performer, session man, etc. no illusions of 'fame' or anything.) including over $100,000 on a music degree. I suppose I would rather deal with this pain the rest of my life than lose my ability to play if the surgery goes wrong.

The stories about recovery scare me because there is a possibility that I will wake up from surgery and be worse off than before. The doc himself said there is prob a 5% chance of nicking a certain nerve, or making the pain while playing worse or even losing my ability to play altogether.

The doc said more than likely I will be able to start playing again within a few weeks of surgery. But there seems to be a lot of people here that have residual pain long after the surgery - worse than the initial pain that the surgery was for!

I am hoping that in two months I can play pain free - even from the surgery - but I am not seeing a lot of hope for this. My doc is a cardiovascular & thoracic surgeon - not the type of surgeon y'all were discussing.

Any help to ease my head would be appreciated! I desperately need to be pain free and want to continue a career that I have spent so much time and effort on. I don't want to have the surgery if I can't be pain free or there are NEW pains to deal with.

Thanks!

Hello khicks,
I placed a copy of your post in a thread of your own for hello's and replies -
http://neurotalk.psychcentral.com/showthread.php?p=816861#post816861

Jo*mar
10-20-2011, 09:53 PM
PubMed TOS surgery: long-term functional results
http://neurotalk.psychcentral.com/showthread.php?t=17275

Most good surgical outcomes don't need support, or seek out forums like this...


If I was at a point of having to consider surgery or not - the question for me would be -
"do I want to take a risk on surgery or not, after reading what might go wrong???"

343v343
10-20-2011, 11:19 PM
Most good surgical outcomes don't need support, or seek out forums like this...

Good point. Wish there were more documented cases of ntos success. The pubmed articles seem too optimistic.

Shadow1
10-20-2011, 11:20 PM
Thanks for the clarification. I had both ntos and atos symptoms. The ntos symptoms drastically declined for me after doing Egoscue postural exercises and putting more focus on good posture. I was also doing chiro at the same time, so that may have helped as well.

Circulation issues remain for me. Currently trying osteopathic manipulation. Just got started.

Chroma-Regarding your ntos symptoms, how bad were they (i.e intermittent tingling, numbness, etc...) at their worst and what are they now? Sounds like you've made a lot of progress!

chroma
10-21-2011, 10:36 AM
Past neuro symptoms: Severe shoulder and pec minor pain. Numbness in the forearm--based on location and nature I think it was ulnar nerve entrapment, but that's a guess, not the result of any test. I had tingling in the fingertips every day.

Currently I get just hints of fingertip tingling and forearm numbness. I get minor shoulder and pec minor pain on an intermittent basis. My feeling in my symptomatic hand, like if I scratch it, is less than the other hand.

I did not have the classic ntos problem of experiencing pain by reaching for something. I don't think my ntos has been as bad as many others on this board.

Oh and another thing that I did to help, was prop up the symptomatic arm on a regular basis to lift the shoulder girdle and therefore reduce compression in that area. My symptomatic side has a depressed/droopy shoulder and TOS is all about compression, so this seemed like a good idea and it helped me a lot. Not a cure, but relief is always a good thing. :)

My atos has always been worse than the ntos. I've had my circulation back up so bad that my heart started cramping under my sternum (an awful, awful feeling) and I almost fainted. I also had chest pains and severe pallor with that. Went to the ER and the cardiologist, but after numerous tests they could find nothing wrong with my heart. These severe faux cardiac arrests stopped after I started propping the arm up!

But I still have dizziness and still feel my pulse in my body, mostly on the left side. Sometimes my heart becomes labored and the pulse sensation is huge. Based on various details, I believe it's arterial compression (as opposed to venous).

What fun times! :rolleyes:

SD38
10-21-2011, 06:33 PM
Past neuro symptoms: Severe shoulder and pec minor pain. Numbness in the forearm--based on location and nature I think it was ulnar nerve entrapment, but that's a guess, not the result of any test. I had tingling in the fingertips every day.

Currently I get just hints of fingertip tingling and forearm numbness. I get minor shoulder and pec minor pain on an intermittent basis. My feeling in my symptomatic hand, like if I scratch it, is less than the other hand.

I did not have the classic ntos problem of experiencing pain by reaching for something. I don't think my ntos has been as bad as many others on this board.

Oh and another thing that I did to help, was prop up the symptomatic arm on a regular basis to lift the shoulder girdle and therefore reduce compression in that area. My symptomatic side has a depressed/droopy shoulder and TOS is all about compression, so this seemed like a good idea and it helped me a lot. Not a cure, but relief is always a good thing. :)

My atos has always been worse than the ntos. I've had my circulation back up so bad that my heart started cramping under my sternum (an awful, awful feeling) and I almost fainted. I also had chest pains and severe pallor with that. Went to the ER and the cardiologist, but after numerous tests they could find nothing wrong with my heart. These severe faux cardiac arrests stopped after I started propping the arm up!

But I still have dizziness and still feel my pulse in my body, mostly on the left side. Sometimes my heart becomes labored and the pulse sensation is huge. Based on various details, I believe it's arterial compression (as opposed to venous).

What fun times! :rolleyes:
Hang in there Chroma.:hug:
You've been a fantastic source of support and great tips for me and I'm sure others too on this forum. Just remember to use them on yourself.:winky:
With TOS I now understand that its ongoing. Swings and roundabouts.....one symptom goes and so another begins!
Bring it on, hey..... It can't get any worse, surely?
Actually I take back that statement.....ENOUGH ALREADY!!!!!!!
Best wishes SD38;)

Shadow1
10-22-2011, 01:58 PM
Past neuro symptoms: Severe shoulder and pec minor pain. Numbness in the forearm--based on location and nature I think it was ulnar nerve entrapment, but that's a guess, not the result of any test. I had tingling in the fingertips every day.

Currently I get just hints of fingertip tingling and forearm numbness. I get minor shoulder and pec minor pain on an intermittent basis. My feeling in my symptomatic hand, like if I scratch it, is less than the other hand.

I did not have the classic ntos problem of experiencing pain by reaching for something. I don't think my ntos has been as bad as many others on this board.

Oh and another thing that I did to help, was prop up the symptomatic arm on a regular basis to lift the shoulder girdle and therefore reduce compression in that area. My symptomatic side has a depressed/droopy shoulder and TOS is all about compression, so this seemed like a good idea and it helped me a lot. Not a cure, but relief is always a good thing. :)

My atos has always been worse than the ntos. I've had my circulation back up so bad that my heart started cramping under my sternum (an awful, awful feeling) and I almost fainted. I also had chest pains and severe pallor with that. Went to the ER and the cardiologist, but after numerous tests they could find nothing wrong with my heart. These severe faux cardiac arrests stopped after I started propping the arm up!

But I still have dizziness and still feel my pulse in my body, mostly on the left side. Sometimes my heart becomes labored and the pulse sensation is huge. Based on various details, I believe it's arterial compression (as opposed to venous).

What fun times! :rolleyes:

Thanks Chroma, glad to hear you've been able to make progress!

BexUK
11-01-2011, 09:03 AM
I was wondering how long people have experienced numbess for after surgery? My shoulder/upperarm area is still numb (6 days after surgery)....

I thought I'd give an update as it's a year or so post-op now... and in reply to this, my shoulder/chest/upper arm numbness is much the same as it was immediately after the op, and the surgeon says it's likely to be permanent.

Other than numbness though (which I'm getting used to) everything else has gone well - a doppler scan carried out a couple of weeks ago showed that the artery is repaired, so I have a positive outcome from arterial (and minor neuro) TOS!

Bex

chroma
11-01-2011, 11:37 AM
I thought I'd give an update as it's a year or so post-op now... and in reply to this, my shoulder/chest/upper arm numbness is much the same as it was immediately after the op, and the surgeon says it's likely to be permanent.

Other than numbness though (which I'm getting used to) everything else has gone well - a doppler scan carried out a couple of weeks ago showed that the artery is repaired, so I have a positive outcome from arterial (and minor neuro) TOS!

Bex

Thanks for coming back with an update. So is the numbness from permanent nerve damage?

343v343
11-01-2011, 11:39 AM
Thanks for coming back with an update. So is the numbness from permanent nerve damage?

Is it, pins and needles? reduced senses? or?
Any scar tissue or recurrence since?

BexUK
11-01-2011, 01:38 PM
Thanks for coming back with an update. So is the numbness from permanent nerve damage?

Yeah, it's mostly numbness with some abnormal sensation. It was caused by the placement of the excision as it had to cut some cutaneous nerves...

As far as I know scar tissue hasn't been a problem, and my original problem shouldn't recur at least as the extra (cervical) rib is gone :)

Bex

343v343
11-01-2011, 01:39 PM
Glad you are doing better! Would always be interested in hearing with those with NTOS who did not have an extra rib, and how they fared post op. Those are very rare it would seem. The success stories seem to be vascular related, accident victims, or those with anatomical anomalies.

S.i.m.
12-21-2011, 04:25 AM
343-

I am pretty certain I have NTOS, and I am scheduled for surgery on Friday...

Still trying to understand all of the subtle nuances and acronyms....

I believe NTOS simply refers to the fact that your issues are nerve relate versus vascular or arterial, correct?

If so, then, yes...I have NTOS...

Mcmanisport
12-21-2011, 09:12 AM
Good luck with your surgery on Friday!!! Best wishes and happy thoughts to you with your recovery too!! Are you having it done at University of Minn? I've heard only good things about the hospital especially their vascular team.


343-

I am pretty certain I have NTOS, and I am scheduled for surgery on Friday...

Still trying to understand all of the subtle nuances and acronyms....

I believe NTOS simply refers to the fact that your issues are nerve relate versus vascular or arterial, correct?

If so, then, yes...I have NTOS...

S.i.m.
12-21-2011, 11:57 AM
Good luck with your surgery on Friday!!! Best wishes and happy thoughts to you with your recovery too!! Are you having it done at University of Minn? I've heard only good things about the hospital especially their vascular team.

Thank you very much, I appreciate it...

I am having this procedure done at the Fairview Southdale hospital by Dr. HL Saylor... Even though it isn't being performed at 'the U of M', I do think he is a part of their team...

Thank you again-
Steve

Scaredsilly
12-22-2011, 12:15 AM
BestUK- You had arterial tos? So basically all your symptoms from that are gone?? What were your original symptoms? How were you diagnosed?

ladylaura418
01-22-2012, 05:40 PM
Just a quick note to thank everyone for contributing to this thread. Very helpful to read through. :)

SD38
01-24-2012, 05:12 PM
Just a quick note to thank everyone for contributing to this thread. Very helpful to read through. :)

I see that you're from Boston...... love that city!!!!!!
Been twice..... NOT ENOUGH.:winky:
Best wishes to you and your fantastic town.:)

Limoges
01-24-2012, 10:34 PM
So, I feel you if you are sitting out there reading this and are trying to make your own decision about surgery. Please, you aren't alone!! Reach out - we are all very unique and individual re; our specific anatomy (something I learned along the way) and not one of us is the same re: tx. BUT there are a lot of similarities and we have all had a lot of experience knocking on doors and doing research. Good luck!!![/QUOTE]

Hi, Moxie (and others)! I'm going to have surgery with Dr. Donohue and would would love to talk with you. I'm not sure how this forum works or how to do this.

Thanks everyone for your stories, which are very helpful!

chroma
01-25-2012, 01:18 AM
I see that you're from Boston...... love that city!!!!!!
Been twice..... NOT ENOUGH.:winky:
Best wishes to you and your fantastic town.:)

LOL. I'm reading a series of exuberant SD38 posts tonight on everything from past rants to Boston.

Has someone been hitting the vino tonight? ;)

SD38
01-25-2012, 08:11 AM
LOL. I'm reading a series of exuberant SD38 posts tonight on everything from past rants to Boston.

Has someone been hitting the vino tonight? ;)

Are you sure you can't see me??????????????:o
You have freaked me out!!!!!!!!!!!!!!!!!!!!!! YES...... I was on the vino. AAAAAAGGGGGGGAAAAAAAIIIIIIIINNNNNNNNNN.
And it was VERY nice too! It was a bold fruity red....and LOT'S of it.
Well, it helps to numb me.:D

whitedianthus
01-25-2012, 08:21 AM
I am one year out from this surgery. My experience was it was truly a breeze. I feel lucky, given the other folks experiences.

The only hiccup was the first 24 hours after surgery. Apparently my lung got nicked or some such, and they were very interested in my ability to take deep breaths. I had this little plastic device that I had to blow in about every hour as deeply as I could.

Went home afternoon of the day after the surgery. Was weak and etc, but mostly from the anesthesia. There was swelling, etc. as with all surgeries. But, actually, since they were just taking something out, and not having to repair anything, it was remarkably easy to recover from.

I have gotten so much advice from forums before I decided to have the surgery. So, I'll offer here to answer any questions folks may have who are suffering from TOS. After suffering 20 years with numb hand etc., this is the ONLY thing that has helped. I would say I have about 75% improvement. Strengthening my shoulder seems to help the rest of the way.

SD38
01-25-2012, 03:34 PM
[QUOTE=whitedianthus;844930]I am one year out from this surgery. My experience was it was truly a breeze. I feel lucky, given the other folks experiences.

The only hiccup was the first 24 hours after surgery. Apparently my lung got nicked or some such, and they were very interested in my ability to take deep breaths. I had this little plastic device that I had to blow in about every hour as deeply as I could.

Went home afternoon of the day after the surgery. Was weak and etc, but mostly from the anesthesia. There was swelling, etc. as with all surgeries. But, actually, since they were just taking something out, and not having to repair anything, it was remarkably easy to recover from.

I have gotten so much advice from forums before I decided to have the surgery. So, I'll offer here to answer any questions folks may have who are suffering from TOS. After suffering 20 years with numb hand etc., this is the ONLY thing that has helped. I would say I have about 75% improvement. Strengthening my shoulder seems to help the rest of the way.
------------------------------------------------------------------------------------------------------------------------------------------------
Any tips on what you did to help strengthen your shoulder? I have alot of discomfort from my rhomboid muscle amoungst others in my shoulderblades and soon to see a physiotherapists to work on this. But any extra tips/advice would not go amiss!:)

NicoleK
01-27-2012, 02:22 AM
I'm 6 weeks post-op cervical and first rib resection and scalenectomy. I have (had) bilateral cervical ribs with 100% arterial compression on the right side when my arm was elevated. My cervical rib was completly fused with my first rib, surgery was pretty rough. I'm getting pretty tired of it at this point, my arm pit is still completly numb and the back od my arm feels like its on fire when touched, anyone have this nerve damage numbness post-op? I am really hoping this goes away :(

Joanna81
01-27-2012, 04:33 PM
I'm 6 weeks post-op cervical and first rib resection and scalenectomy. I have (had) bilateral cervical ribs with 100% arterial compression on the right side when my arm was elevated. My cervical rib was completly fused with my first rib, surgery was pretty rough. I'm getting pretty tired of it at this point, my arm pit is still completly numb and the back od my arm feels like its on fire when touched, anyone have this nerve damage numbness post-op? I am really hoping this goes away :(

I had the top of the arm on fire thing after each surgery, the first went after a while, this time I'm 9 days on, the fire is there. It is awful but it does pass. Not sure what caused it, I figured it was some nerve hyper sensitivity.
The numbness should decrease after 12 months or so according to my cons. Not back to normal as that nerve has been cut, but you will get some feeling back. A numb armpit is better than more chronic nerve pain.
The journey is a rough one, for some more than others. I've had a pretty hard time of it.
Hang on in there :hug:

SD38
01-28-2012, 04:03 PM
I'm 6 weeks post-op cervical and first rib resection and scalenectomy. I have (had) bilateral cervical ribs with 100% arterial compression on the right side when my arm was elevated. My cervical rib was completly fused with my first rib, surgery was pretty rough. I'm getting pretty tired of it at this point, my arm pit is still completly numb and the back od my arm feels like its on fire when touched, anyone have this nerve damage numbness post-op? I am really hoping this goes away :(

5 months post op now and the front of my shoulder feels quite numb still. Its a strange sensation when I scratch it as I can't actually feel it too much but at the same time my skin very close to the region is over sensitive and the slightest touch feels like it's being rubbed with wire wool:confused:. I've kind of gotten used to it however:rolleyes: and the intensity has settled down. I'm sure yours will settle too aftertime, try to relax and gently massage the area with oil to soothe.

astern
01-29-2012, 11:06 AM
I'm getting pretty tired of it at this point, my arm pit is still completly numb and the back od my arm feels like its on fire when touched, anyone have this nerve damage numbness post-op? I am really hoping this goes away :(


Nicole, these sx can take a while to resolve, different for everybody. My burning armpits took about 4-5 years to resolve - and sometimes they act up again. Ice is my very good friend! :D I know you are tired of dealing with all this, but keep telling yourself that the worst is over and it will get easier as time goes by.

Be sure not to lose your range of motion - do easy stretching of the upper thoracic, shoulder, arm and neck. Easy does it!

Anne
:grouphug:

Scaredsilly
01-29-2012, 09:36 PM
I notice there is a few of you who have ATOS or VTOS. I am pretty sure I have true ATOS OR VTOS without neurological part. There are no good doctors in NEW YORK and I cannot see Dr. Donohue in Boston until6 months when my insurance kicks it. Does anyone know if I am a severe risk within 6 months of aneurysm or blood clot?

My symptoms are only bulging veins on right hand only and throbbing. I also get right sided head aches and neck pain. THe pain on a scale 1-10 is not high its a 3 or 4. The only reason I am going forward with this is because I know even though it doesnt disturb my life right now, that one day it will and its dangerous.

I need advice with someone who has gotten diagnosed with this and what their doctor told them.. I went to one vascular surgeon in ny and he didnt know much about thoracic outlet syndrome. He did a doppler on both arms and only put my arms in 2 positions. He said that there is compression and as of now he doesnt see and aneurysms or clots.

Now I could have damage to an artery still, correct? The doppler wouldnt pick up damage to the artery or vein wall would it?

Also, how painful is the venogram and arterogram? I keep hearing bad things about surgery, however, doesnt the patient have no choice in the matter?

If ATOS or VTOS can kill them then they have to get the surgery, no? But the surgery can do worse damage if the surgeon doesnt know what hes doing??

So basically what I am saying is..the surgery is a 100% cure ONLY IF they remove the EXACT PRECISE reason the artery is being compressed int eh first place. If they pick the wrong anatomical structure then the surgery was a failed attempt and the patient is worse off...

I apologize for ranting and raving. You all here are the only people that understand what I am going through. I cannot talk to my family or friends about this because they do know what it feels like to constantly worry if my arm is going to throw a blood clot to my brain.

I am suffering from constant worry from this and I have no hope. Is there anyone out there that can put things into perspective for me? Anyone who can share what their doctor has told them? Thank you everyone who reads this and offers advice. I appreciate it more than you know= )

chroma
01-30-2012, 04:50 PM
I notice there is a few of you who have ATOS or VTOS. I am pretty sure I have true ATOS OR VTOS without neurological part. There are no good doctors in NEW YORK and I cannot see Dr. Donohue in Boston until6 months when my insurance kicks it. Does anyone know if I am a severe risk within 6 months of aneurysm or blood clot?
...

Disclaimer 1: I am not a doctor.

Disclaimer 2: Symptoms and risks vary between patients.

Read the following paper:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2728415/

IIRC only a 1 or 2 people needed their blood vessel repaired.

Also, if your symptoms get markedly worse, like the whole arm swells and changes colors (VTOS), then you must go to the emergency room (ER). Same if you get anything else like chest pains or faintness (ATOS).

You might also play around with various kinds of arm support to take weight off the shoulder girdle or even move the collar bone away from the first rib to open up the space. I'm not promising it will help, but for some it does.

You can also try not sleeping on your symptomatic side in the event that you are doing so. I would think that would only add to the compression.

I understand from your message that you would like more certain answers to your questions. Unfortunately, with few people understanding TOS and apparently no perfect diagnostic tools there is not much certainty to be had.

HTH

Limoges
02-13-2012, 03:08 PM
Chroma, have you had a first rib removed? I haven't read all your posts but wondered if you have had surgery for TOS. You seem very articulate!

chroma
02-13-2012, 06:19 PM
Chroma, have you had a first rib removed? I haven't read all your posts but wondered if you have had surgery for TOS. You seem very articulate!
I have not had the first rib removed, but have not ruled out doing so. One of the biggest deterrents for me is that some people come out worse and for a surgery that is expensive both in terms of cost and post-op down time, that is completely lame!

Back in July of 2011 I knew nothing about thoracic outlet syndrome. When I was first diagnosed, I said "Spell that." :D

Much of what I've learned has come from this forum and the web sites people have pointed to. I also question my PT and chiro and combined with various books I've read, try to make sense out of all of the bits of information. I try to connect the dots because none of these health practitioners are with you day in and day out.

Limoges
02-13-2012, 06:52 PM
Thanks for your reply. I thought I saw a post of yours on the post-op thread and was trying to figure out if you were doing pt after an unsuccessful surgery. I'm hoping to be a success story myself. After many years of chronic pain, I feel like I have nothing to lose.

chroma
02-13-2012, 07:21 PM
Thanks for your reply. I thought I saw a post of yours on the post-op thread and was trying to figure out if you were doing pt after an unsuccessful surgery. I'm hoping to be a success story myself. After many years of chronic pain, I feel like I have nothing to lose.
That's an understandable decision and there are success stories out there, so it's definitely possible:

wihtedianthus: http://neurotalk.psychcentral.com/post844930-88.html / http://neurotalk.psychcentral.com/post844933-1.html

josepentia: http://neurotalk.psychcentral.com/post827948-13.html

184jones: http://neurotalk.psychcentral.com/post847129-20.html

Good luck and stay in touch!

Limoges
02-13-2012, 11:37 PM
Thank you, Chroma! I'm still wandering through this site reading bits and pieces. You made it a lot easier for me.

STW1023
06-03-2012, 03:12 PM
I was diagnosed with Pagett Schroeder's syndrome 4 years ago, and proceeded with the rib resection. I was hoping someone who has been through this could have some advice for me. My pain post-op has always been a constant, not terrible, but still there. recently, in the past month or so, it has gotten consistently worse. It's been a mix of sharp pain & numbness going down my arm. Any ideas? I haven't been able to find much information on patients long term recovery with this sort of thing.

nospam
06-03-2012, 04:39 PM
I was diagnosed with Pagett Schroeder's syndrome 4 years ago, and proceeded with the rib resection. I was hoping someone who has been through this could have some advice for me. My pain post-op has always been a constant, not terrible, but still there. recently, in the past month or so, it has gotten consistently worse. It's been a mix of sharp pain & numbness going down my arm. Any ideas? I haven't been able to find much information on patients long term recovery with this sort of thing.
Was your procedure transaxillary or supraclavicular? It sounds like you have some neurogenic symptoms now as a result of the surgery (perhaps scarring/adhesions). Have you been to physical therapy? Nerve mobilization/gliding/flossing have helped my arm pain & numbness. Also, icing from my clavicle to my underarm has been beneficial as well.

However, I'm only 6 weeks post-op from left rib resection (transaxillary) and 1 week from the right (hardly long-term post-op). My case is both neurogenic and vascular.

antikamars
09-12-2012, 10:21 PM
bump...found this post useful in my research before surgery.

TosDad
09-18-2012, 08:08 PM
bump...found this post useful in my research before surgery.

I found this thread very helpful as well. After dealing with tos for 15 or so years, it finally got the best of me and I decided on surgery. I had surgery back in June with Dr. Annest and Dr. Sanders in Denver. So far I've been doing very good. Back to work, slowly getting back into cycling and best of all back to being a husband and a dad. Working with the physical therapists from Denver, (I'm from Utah) has been invaluable. Dr Annest was awesome, and the recovery although hard and frustrating at times has been far better than the ordeal tos was before surgery. Thanks to all for sharing your insights into surgery and if anyone has questions about going to Denver for surgery feel free to ask.

barstow
09-29-2012, 09:11 PM
Hi,
Had surgery to remove the 1st R rib mid-June of this year. For the most part, bounced back, but even now (3 1/2 months later) the tricep-area of my arm is still numb and my forearm/wrist area will swell after long bouts of exercise.
Wondering how long the numbness lasts--my TOS was caused from pinched subclavial vein causing blood clot(1) two weeks before surgery. As well as how long I may have to endure the swelling after working out (some days I still wrap my arm which helps).
Thanks!

nukenurse
09-30-2012, 03:17 PM
Hi Barstow,
can you please share who you had surgery with, the type of TOS you had, and surgical approach? Thanks

antikamars
09-30-2012, 10:10 PM
1.How was it right after surgery? Day of? The first couple days?

a.) right after surgery was pretty groggy and with the anesthesia that was given I couldn't feel the pain but the incision areas (subclavicular rib resection (2 incisions about 8cm each)were very numb
b.) had surgery at 2pm so was asleep most of the first day
c.) The first couple of days was very difficult. First night was spent in the ICU for close monitoring. I was given morphine as needed which on that first day was 3-4 hours. Moving at that point was very difficult but with the help of one fantastic nurse was able to sit up on the first night. Was moved to a regular room the next afternoon. During the time that I was switching rooms the took me on my rolling bed to get X-rays. Moving that day was difficult but I was determined to sit in an upright position during the times that I was not sleeping. That was also the day that I switched over to oxys. Stayed an additional night in a regular room and was discharged the following morning at 11am after my vascular surgeon, Dr. Akers of Premier surgical associates, had visited. I was so ready to go home that day and be in the comfort of my family that I had changed by myself out of night clothes and into frumpy casual clothing before the doctor had came to visit.

2.What was it was like when you left the hospital?

My husband who was at home taking care of the girls and visiting while the older was at school came to pick me up. The discharge process can take some time and if you are alone for the majority of the hospital stay you will need to start well in advance to get everything you need packed up.
The drive home can be semi difficult. You will want the path with the least amount of turns. Bring pillows.

3.What was it like getting around?

At first it was difficult but the more you move and try to sit up the easier it is. Have a table or cart with things that you frequently need. I'm on week 3 now (tomorrow) and it is still very handy to have. Mine is stocked with books, drinks, personal grooming items, medications, ribbon (okay I'm crafty).

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?

At first things were still difficult and I welcomed a loving arm helping me to get up from place to place.
After the first night in the ICU they removed a catheter and so I was able to get up and go to the bathroom on my own. I was able to take a shower on the 4th day after surgery. A wonderful tip that I picked up from here are the Walgreens bathing wipes that were refreshing enough to not feel as though I hadn't bathed. I preferred showering because I could sit down in the tub let the water rain down and wash my hair/body with my good arm(surgery on left side).
What I did need help at first with was lifting items. I did not use my left arm at all for the first 5 days and after that being on the 3rd week nothing more than 5lbs and that is pushing it. *I'm a lefty who must have morning coffee and so I've learned to train my right arm to do a lot of the things that I feel my left side just isn't conditioned enough to do yet. (such as filling the coffee machine)

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?

I took my dressings off on the day after I came home. I have been since using vitamin E capsules broken open on my incision. For the first week and a half I did not want my incision to get wet and still wanted it to be protected and so I would put waterproof bandaid dressings (the see through tape looking kind- also purchased at Walgreens drug store). You cant wear it with the vitamin E and so I alternated sometimes leaving the showering strips on for 2 days. They are wonderful.

6.How did you manage pain? Did you need ice a lot?

When I left the hospital I was taking my Oxys about 4-5 hours apart and it would cause me to wake up. I did use ice packs at night to help on my worst pain spots and to stay asleep longer. I gradually increased the time in between my doses and just used them at night to try and get better quality rest. I came off them right before my 2nd week. (also have lowered the med that the doctors have had me on for the past 2-3 years for pain-no more ibuprofen or Tramadol and have decreased levels of cymbalta and lyrica)

7.What was it like the first couple of days? Challenging.

8.The first week? The hardest thing was getting used to doing things slow..is not in my nature.

9.The second week? On the 8th day after surgery I tested the waters out to a craft store to try and find things to keep me busy during recovery. I learned that day what pushing too fast means. I was browsing around the store for around 2 hours and while I only seemed tired and achy when I got home the following day was pure torture. I got a sharp pain that caused me to hurt every time I moved in my trapezius muscle. After 2 days in bed regretting what I had done I slowly started to feel better. (ice was what got me through it...on the direct ache spot and above my incisions).

10.a month post op? Not quite there yet. Had surgery on Sept 10th and today is the 30th.

11.two months post op? etc.? I'll let you know.

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?

I am lucky to have a wonderful husband that cooks almost every night, but I also did alot of quick meal shopping at the grocery store right before the surgery. I am able to make most things now without any problems. I can feel that I am pushing myself when mixing or cutting things most....more from the repetitive motion than anything. Still trying to take things easy and I am glad I have a dishwasher/and or wonderful spouse who scrubs the greasy ones.
Laundry is something I have to pace myself on not to tire myself out to easily. I have started a game since our machines are within out kitchen vicinity that I fold only a few things when I go by and when I have my piles I put them up only a room at a time.
Shopping is something that I enjoy all too much. I'm a bargain girl and am used to taking my time in stores scouring for the deal. That is what got me in trouble on the 8th day and I still have to watch myself with. I am now at the point where I am able to go out in about 2-3 hour periods without hurting too much. This is my biggest difficulty.


13.How active were you, ie. walking around?

The surgery has helped me feel wonderful...and I have to pace myself which is so very hard. If I am sitting or standing for long periods at this point I become sore and achy to the point that it is difficult to fall asleep. I have until Oct 17 to try and get to a point to where I am able to sit for long periods (have a sit down office job and am considering starting back at 30 hours at first which is the minimum my job allows and will allow me to keep my health insurance. My spouse is a stay at home dad to our 2 girls ages 2 and 8. I have enough FMLA left to make it until Nov 25th with it renewing in April.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?

1.) The button to adjust the bed was my best friend and what helped me to move around so quickly.
2.) Make sure you get a pain med dose before you go home because pharmacies are slow and you will want to just lay down once you get home. (save the extra trip out for your recovery helper)
3.) First few days slept on a comfy couch at a elevated position sleeping on my back with a pillow under my left arm as well.
4.) Take it slow. See above. I would have been better than I am now if I had. Learning from my mistake and trying to take it easy.
5.) Scott Sonnon's youtube joint mobility exercises have prevented me from having to return to physical therapy and slowly ease back into using the muscles.
6.) Have a wonderful support team.
7.) If you are used to doing most thing in your household try to prep well in advance so that it is less on you in those first few days. Example: I prepped school outfits for our 8 year old enough for the first 2 weeks (she has different classes such as art, gym, etc that she likes to dress differently for), prepaid the next 2 weeks of bills so I didn't have that on top of the hospitals, grocery quick meal (try to stay away from things that involve a fork or knife for the first week).
8.) Hot showers on tired muscles are wonderful.


Hope this helps someone. This thread was what helped me feel confident going through with surgery. I am not 100% better yet but that is what I am gear and working towards. The pain in my upper neck and back which was the worst thing and what was causing me the worse agony is gone. I still get these spots and numbness in that arm when I over exert myself. Its a slow process recovering and though it is difficult taking it slow I know that it is what will and does make me feel better. I just need to allow myself to heal. Thank you to this community that has shared their issues and experience. Before I found the forum I felt very scared and alone in my pain.

Amber

nukenurse
10-02-2012, 03:56 PM
Hi Antikamars,
can you please share who you had surgery with, the type of TOS you had, and surgical approach? Thanks

antikamars
10-03-2012, 11:13 AM
TOStrojan, I live in Tennessee and had my surgery with Dr. Donald L Akers of Premier Surgical Associates in Knoxville. I had my surgery by anterior supraclavicular approach on my left side removing the first rib and scalenes with some of the scar tissue that had built up. I was diagnosed with true neurogenic TOS and was given the option for the surgery after going through physical therapy. My TOS was developed from several possible causes. Had a car accident in 2007 where clavicle was fractured, re injury at job where was manager of pizza place for 5 years (repetitive), pregnancy that set of the TOS in 2009 and job with no ergonomics for last 4 years.

Amber

Beokitty
01-25-2013, 10:39 PM
Because I found this forum so helpful prior to my surgery I thought I'd share my experience as well! I had a transaxillary first rib section by Dr. Freischlag at Johns Hopkins in Baltimore. Had been experiencing symptoms/pain since January of 2004 but didn't receive a diagnosis of neurogenic TOS till 2011 when I had a scalenectomy in September (from above the collar bone). This did not help my symptoms so was offered the rib resection after an intensive PT course pre-op (Dr. Freischlag gives you a very specific PT protocol to give to the PT.

I had the surgery on 12/14/2012, lasted less than 2 hours (surgery itself).

Some of my questions:

1.How was it right after surgery? Day of? The first couple days?

Right after surgery you're really kind of out of it and sleepy/medicated, i just wanyed to get to my room so i could relax. The skin was completely numb but it felt weird to have my arm against my body since the area was so swollen, the nurses had put a pillow under my arm to prop it up a bit any this trick made recovery for the first few weeks soooo muc easier and less painful. Regarding pain, I was lucky to have a PCA of Hydromorphone both in recovery and in my room. This was fabulous as in my prior surgery I had only po Percocet post-op which left me in a constant state of anxiety. I was inpatient one night, they did put me on bed restriction as a fall risk so I'd have to call if I needed to get up for anything. The first night is painful - but with proper meds not too bad - ask for more if you're hurting more!

I also noticed pain when I breathed in deeply - sometimes I felt almost short of breath or that my left lung was inflating all the way - I'd get a sharp pain when I tried to fill that lung. This side effect was probably the most disconcerting at I know pnuemothorax can occur - but it was just a bit sure from being poked at. This symptom lasted for probably a week or two before it resolved completely.

The next day I was a bit more sore - they removed my IV a little before they started the discharge which was problematic because they couldn't give me any other meds at the moment so I was in horrible pain about 2 hours later when we were waiting for the PO rx to be filled & then kick in (was given soma & Hydromorphone).


2.What was it was like when you left the hospital?

The ride home wasn't too bad. I'd say bring a pillow or roll up a sweatshirt to support your arm in the car. They gave me a sling & the option to wear it - I didn't like it because I felt like it pressed my arm to tightly to my body which is uncomfortable.

Coming home and laying flat in a bed was the worst part of the whole ordeal. I had been without meds for a few hours and was really really hurting - I was shivering and scared and laying flat (tempur-pedic pillow worked wonders) hurt as its a braing new position. I took my meds and slept all day. I didn't even try to get set up on the couch until the second or third day as it hurt too much to get up and manipulate pillows and such. I had to sleep flat on my back for the first week.

I also had a lot of pain in my upper back, like lots and lots of knots/spasms etc wll muscular. the heating pad worked well on that - it was pretty uncomfortable.


3.What was it like getting around?

It was painful to stand up and sit down, walking around wasn't bad... But I was terrified I would fall so I tried not to do it so much at first. I probably didn't leave my apartment for the first time until a week after the surgery when I went for a walk around the block.

I couldn't drive for about 3 weeks. I was released to do so after 2 weeks as long as I wasn't taking meds, but when I tried it in a parking lot I had soooo much rebound pain that I didn't try it again until a week and a half later after I'd been in PT for a bit.

I can drive w/o problems now (5 weeks post-op) but have only gone maybe 10mi one way, not really long distances.


4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?

I had my husband to help me, but I didn't need help showing or using the bathroom or anything once I got home. I wasnt supposed to shower for 3 days post op so it did give me a bit of time to recouperate before tyring it.

My husband needed to assist me with opening jars or bottles, cleaning the apartment, doing laundry, procuring me food - first week and a half I depended on him a lot & he was great. I started feeling more self sufficient after about 2 weeks.


5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?

I did not, my incision was under my arm pit. It was very swollen and uncomfortable for about 2 weeks. My stitches were dissolvable, other than not being able to shave/wear deodorant for the first 2 weeks.


6.How did you manage pain? Did you need ice a lot?

I never used ice, used heat for the muscle pains and soaking in a hot bath after the incision healed. I took Hydromorphone for the first week, Percocet for the 2nd and third, and was off narcotics after the 3rd week. Still take Advil & Soma.


7.What was it like the first couple of days?

See above (difficult, painful, sleepy, medicated!)

8.The first week?

See above

9.The second week?

See above

10.a month post op?

See above

11.two months post op? etc.?

Not there yet!

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?

My husband assisted, it would be difficult to do those things yourself so I'd suggest asking someone for help. You could but I would plan easy to eat meals and make sure things are not high up (reaching is difficult and painful), make sure you have enough laundry and food to last a couple weeks and have someone who can help if you really need anything. Prepare like you're preparing for a huge storm.

13.How active were you, ie. walking around?

By 4 weeks post-up I felt pretty sure on my feet and wasn't have a whole lot of pain. I was also able to do light cleaning and cooking, etc.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?

A maleable pillow, a heating pad, temperpedic pillow for nighttime sleeping.

Also:

I got to keep my rib :D

marbleye_hooker
06-03-2013, 07:16 AM
not sure if this is any help but i have just had a rib removal experience. october 2012 i had eight ribs removed and about 1/3 of my sternum to correct an injury. i now know the meaning of ouch, i thought i already did with my last four surgeries to try and repair a fractured dislocated sternum but i was wrong! ribs 8,9,10 and 11 were removed on both sides. i went in for exploratory surgery with the possibility of removing 1 or 2 ribs and maybe the lower part of my sternum and awoke 8 hours later moaning. i was in the hospitol for 5 days. had a moraphine pump set up and other meds but it was excruciating. after i left the hospitol i chose to not take pain meds, not because it didn't hurt but because i don't like thier effects. i was very sore for the first few months as i am still now. laying down is a pipe dream i can only assume i will sleep in a recliner the rest of my life. outside of bathing and some light cooking and a little driving someone else has to do the rest. i am still phenominally numb around my areas of surgery. it is very slowly going away. my dr says it will not go away completely, time will tell. i have also just received a copy of a letter sent from my dr to the insurance company informing them that i likely won't be returning to work. if you combine the physical pain and disability and the games with workers comp together i would have to rate this a less than pleasurable experience.

TOSEdinburgh
05-29-2014, 09:36 PM
I know this thread hasn't been used for a long time but if anyone happens to see this- advice would be great!
I am 5 weeks post op after a first rib resection on the right hand side for TOS. My incision is around my clavicle.
Immediately upon waking after the op I had intense tingling in my hand and the loss of sensation. I can move my fingers but not normally and I have little strength. My arm mobility, particularly when stretching up or out, is very limited and the muscles in my arm hurt A LOT. I feel this may be a result of some nerve damage during the op, the consultant was surprised and assured me they didn't cut any nerves and has no idea why this has happened.
I am on stronger meds now to try and help with the tingling but I still have problems with the movement and sensation. Has this happened to anyone else? Particularly the hand tingling?

brisco71
05-31-2014, 06:41 PM
I had the hand tingling after the surgery. It is normal, I think. My hand was useless and swollen too. 4 months out and it is about completely gone. It does improve a bit each day, so don't worry, it won't stay like that forever!

Eight
06-02-2014, 10:02 PM
not sure if this is any help but i have just had a rib removal experience. october 2012 i had eight ribs removed and about 1/3 of my sternum to correct an injury. i now know the meaning of ouch, i thought i already did with my last four surgeries to try and repair a fractured dislocated sternum but i was wrong! ribs 8,9,10 and 11 were removed on both sides. i went in for exploratory surgery with the possibility of removing 1 or 2 ribs and maybe the lower part of my sternum and awoke 8 hours later moaning. i was in the hospitol for 5 days. had a moraphine pump set up and other meds but it was excruciating. after i left the hospitol i chose to not take pain meds, not because it didn't hurt but because i don't like thier effects. i was very sore for the first few months as i am still now. laying down is a pipe dream i can only assume i will sleep in a recliner the rest of my life. outside of bathing and some light cooking and a little driving someone else has to do the rest. i am still phenominally numb around my areas of surgery. it is very slowly going away. my dr says it will not go away completely, time will tell. i have also just received a copy of a letter sent from my dr to the insurance company informing them that i likely won't be returning to work. if you combine the physical pain and disability and the games with workers comp together i would have to rate this a less than pleasurable experience.

Wth??

What happened to you?

brisco71
06-03-2014, 12:25 AM
Wth??

What happened to you?

Ditto. That's what I was wondering, what the heck was your original injury??

Lynsey78
10-28-2014, 09:29 AM
Hello there,
Just wanted to know if anyone could tell me about their experiences recovering from this op please?

My b/f needs to have rib one resection due to on going blood clots. He's had 3 in his upper right arm in the last 2 months but no other symptoms. They don't really know what is causing the clots as he's also having chemotherapy and had a PICC line fitted in this arm originally that the vein kept rejecting

However he is a roof tiller by trade & the arm that clots is his lifting arm.
How are any of you now with lifting heavy weight? We are concerned he won't be able to go back to his trade again after the op.

Thank you for any advice anyone can offer, there seems very little on the internet of personal recovery stories.