Intros & your TOS history {a short version is fine} [Archive]

Wittesea

08-29-2006, 09:58 AM

Hi everyone :) It's good to see so many familiar names here.

Since we are doing introductions....

I'm Liz, with no official TOS diagnosis but a doctor who said "probable Left sided TOS". I never went to a specialist to get 'officially' diagnosed because it doesn't really matter anyway (since I could never and would never have surgery anyway). Based on symptoms, the doc who said 'probable TOS' says it is neurogenic TOS. So I'm just gentle with my arm to try not to make it any worse.

I have Fibro, and connective tissue disease, and "possible MS" and a variety of other stuff for which I take a variety of meds.

Nice to be able to see everyone again and reconnect :)
~Liz

PS to Tamara --- the reason that you couldn't sign-in as TamaraShadow is because these are completely different forums with no affiliation to braintalk or John Lester, so there is no database that remembers anyones usernames from the original BrainTalk.

This forum was set up by a man named DocJohn who runs the website and forums at PsychCentral and he set them up because he was concerned with BT being offline for so long with no updates, so he set up this BT2 for the BT members to be able to get back in touch while the original BT is offline/broken/gone. He named it BrainTalk2 so that people could easily find it.

Some people want him to keep this place open even after the original BT is fixed (there is a poll about that in Forum Feedback along with lots of posts as to peoples reasons for wanting this place to remain open) and if it does remain open after BT is back online, DocJohn said he would then change the name to something different.

You could use the name TamareShadow here, you just have to newly register it the same way you newly registered tshadow.

tshadow

08-29-2006, 07:14 PM

Actually I did try to register Tamarashadow, but it said someone else already took it, and that it didn't register my email...so I had to choose another one. I kind of like my new one, though!

olecyn

08-30-2006, 01:30 AM

Injury 6/2000, continued to work with minimal restrictions.
Dx'd 5/2002
8/2002 Bilateral BP & R Ulnar Nerve Depression
9/2002 Symptoms returned
1/2003 RCTR
8/2003 W/C denies ALL PT, recommended tests, pain management & vascular surgeon consult
8/2005 dx'd with Ovarian CA
W/C continues to deny all ...
But hey,
I'm alive and fighting everyday even though it gets old, old, old.

law76

08-31-2006, 11:19 PM

That's Right....work Comp Is Bs!!! Now Denying My Meds As My Adjsuter Indicated That My Pain Meds Would Not Be Denied...she's A Lying *****

Jo*mar

09-01-2006, 12:51 PM

1999 - Bilateral repetitive strain = fingers, hands, forearms
2001 - R- neck/shoulder strain - due to work
2002/2003 - another neck/shoulder strain R- {slight tear??} - due to work
Barely recovered from that and {MCO} Dr. returned me to full work {again??}
2003 - all of the above returned and increased in symptoms over time

Eventually spred to include some short term ulnar nerve pain and L shoulder pain, with some hypersensitivity remaining in elbows and forearms for over a year.
03/04 started seeing links and info about TOS and then found BT1.

Most of my symptoms are mild now, as long as I pay attention to overuse and posture issues.
I think I do have a chronic C/T spine strain along with TOS & RSI

If I lift or carry something heavy with arms out I get a very weird pulling pain right in the T spine/C spine junction. Even reaching out over the couch to slide the window shut is a pain.

trix

09-01-2006, 06:47 PM

1991-rear ended minor whiplash
1993-rear ended minor whiplash
1994-I rearended someone minor whiplash
2005-rear ended
march 2006 diagnosed with bi-lateral TOS
June 2006 put on surgery wait list
I did 6 months of physio and and continue to do chiro1 or 2x per week.
I am remodeling my basement and deck, and I run a daycare from my home. My pain levels are growing week by week.
My lawyer is on leave for cancer treatment, and my husband works 50 hours per week.
With any luck at all, the surgery will come soon, and hopefuly I will get better, get retraining and be able to go back to work.

Gromlily

09-02-2006, 01:27 PM

Injured 11/02-Bilateral TOS

11/05- (YES 3 YEARS LATER!!) supraclavicular decompression surgery -removed 1st rib and 2 scalene muscles on the left side, my dominant side
mild disc tear in c5, c6,

recovering- still unalble to shop, cook, clean, drive...... in other words no life...

post op. experience - less pain on left, less swelling of arm and hand, no more discoloration unless I over do, some relief in numbness and pins and needles, still have a numb pinkie finger

post op complications- new stabbing pain in my shoulder blade, weaker neck (duh ! 2 muscles gone ! ) twitch in L eye lid almost constant. L eye, dialates less then R, some difficulty with breathing, voice changed,(not for the better :eek: ) TMJ symptoms worsened.

I still would do the surgery again, the pain relief was worth it!!! :D
Believe it or not I am optomistic I will get better and be a self sufficient individual again, maybe slightly different, but I will have a life again!! :)

Gromlily~

tonia

09-03-2006, 11:43 PM

Hi ALL!!!...
I am a long-time sufferer of dodgy arms (especially elbows), rotten neck and lower back...
I had heart surgery in April '06 to remove Aneurysm and replace Aortic-valve...
Connective Tissue Disorders suk!

Krankie

09-04-2006, 10:03 PM

Hi guys...

I'm 30 w/ bilateral TOS due to a work related injury that occurred in Feb. of '03. I have been out of work for 2 years now and ambored out of my mind!!!! But I feel much better since I'm not working. I am awaiting a hearing for disability and I am presently on W/C, which is another story all together. I'm glad to have a forum back so I can listen to what everyone has to say about TOS and all the other problems that I can relate to. Hope to hear from everyone soon!!!!

Krankie

beth

09-05-2006, 05:15 AM

Hi everybody,

When BT went down I was fine for a while. But I REALLY started missing my friends after 3-4 weeks, ya know? Very happy DocJohn put this up for BT users!

Here's my story:

2/2003 Td vaccine reaction causes BP neuritis, RSD, central sensitization, leads to rt-side TOS due to pre-disposition (extra scalene muscle wrapped around lower BP)

2/2003-8/2003 Pain meds, muscle relaxants, sleep aids, MRI, EMGs, PT/OT, chiropractic, physiatry, rest, Doppler sonogram, more PT, see numerous Drs looking for answers

8/2003 Diagnosed w/ TOS, RSD w/ central sensitization - Dr Togut

9/2003- 12/2003 TPIs, stellate ganglion blocks, pain management program (biofeedback, counseling, pain education, massage, ultrasound, interferential, more PT/OT), EKG, MRI, narcotic pain meds, nerve pain meds, anti-depressant,

2/2004 Rt first rib resection/scalenectomy- Dr Annest (re C-8 EMG)

3/2004-1/2005 Nerve glides, PT, Feldenkrais, Tae Chi, massage, warm water therapy, counseling, narcotic pain meds, nerve pain meds, anti-depressant, TPIs

8/2004 Diagnosed w/ lesion rt lateral cord (re 2 EMGs) - Dr Sureka (Peoria)

10/2004 Surgery - pec minor release - Dr Annest

11/2004 Left side TOS diagnosed - Dr Togut (10/2004 Denver EMG supports)

11/2004 Appt w/ Dr Schwartzman - diagnosis severe, full-body RSD.

1/2005 Hahnemann Hospital, Philly, 5-day Lidocaine IV infusion, react to Lidocaine on day 3, relief attempt fails.

9/2005 Hahnemann Hospital, Philly, 5-day Ketamine IV infusion, have really good response, day 5 have zero RSD pain!

10/2005-2/2006 To Philly for boosters, 1st every 2 wks, then every month. Relief now abt only 50% due to the ongoing nerve damage and because I'm always worse in winter. But things stay stable all winter, and it's the best winter I've had in the last 3!

5/2006 Time between boosters extended to 3 months, and it's as though the "magic spell" has started to wear off. One by one pain and sx come back. Stress from frustration w/the insurance co. and legal battle cost me greatly as well.

Which brings me to where I was when BT went down - insurance has denied paying for any ketamine treatments and I've tried most everything else, treatment wise. And when will I hear about the decision on my compensation case? All my RSD sx are back, esp. the pain. Counseling is helping my mental framework, but nothing else is happening. Somethin' has to change! WELL........

I HAVE NEWS - see my post "Good News"!!!!

beth

Horizontal One

09-07-2006, 07:56 AM

Hi

1990 Bi lateral c7 ribs excised with stellate ganglion sympathectomies

6mnth recovery but car crash - rear impact left with bad whiplash --injections in neck for headaches etc and neck pianfor several years.
Viral illness left with neuropathy to lower limb
R SIJ problems - pain +++
All seemed ok til 04 - L wrist pain....within 10 days raging bilat arm pain..only relieved by being flat hence my sign on name Horizontal. Then that did not help.

Lots investigations.....CXR, MRI, EMG ruled out hind brain herniation but do have narrowing/disc degen down c spine.

05 - had exploratory surgery L brachial plexus ----adhesions, rib end excised, muscle cleaned up, nerve fibres pinned down, released...recon work to sub clavian art...
Have colour change, cold hands, grip probs, sensation issues
Very tight thoracic outlet space......lots nerve damage.

Post op......still pain probs persist....lots of drugs inc Ketamine
Breathing problems - have L. hemidiaphragm paralysis and partial paralysis to R. on oxygen and SOB minimal exertion.

Review with surgeon very soon...also under pain doc. - both great docs.
Getting lower limb problems - both knees jointly (no pun intended) giving me pain...despite the pain meds I am on...so this is giving me trouble getting up and moving about.
Had to retire from work.....fed up but maintaining ability to laugh as if get depressed wont be able to drag self out of hole with useless arms.

That's me....like you found myself here and made some great friends...great help and useful advice.

sandy1955

09-14-2006, 11:50 PM

I was diagnosed with tennis elbow in MArch of 03. I worked until was laid off (due to company filing bankruptcy) on December 31, 2003. By the time I stopped working I had to have not one but 3 procedures on the left elbow. Ulnar, radial tunnel release and tennis elbow release-Jan 2004
July 2004-right ulnar release
December 2004-right carpal tunnel and radial release
Since all that cutting didn't help with the pain in my neck and all the numbness, discoloration and tingling up both arms I finally was seen and diagnosed with bilateral vascular and neurogenic TOS. Treatment started a year later with the rib-resection a year after the PT. April 2006.
I am better but can't do much of anything without pain or swelling. So now they are ready to do carpal tunnel release on left hand.
I have said I will never let them do the reb-resection on the right side-I would sooner cut my whole arm off-than suffer the intense post-op pain after surgery on an outpatient basis.
I, too am bored out of my mind...So I eat and eat and eat.......30 pound weight gain attributed to neurontin and Hershey's!!!!

evie

09-15-2006, 07:14 AM

Hi all

My name is eve and I live in Switzerland. As some of you know, I have bilateral, wide cervical ribs and vascular (arterial) TOS which, however, is but a small problem area in my body that seems to be intent on picking rare forms of joint, connective tissue and other problems. The latest one of these is hnpp which was confirmed by genetic testing just 2 weeks ago. It is the cause of quite a few of my neurological problems and mimicked neurological TOS enough to fool the docs for 4 years.

I've had too many surgeries in the past and already have too many lined up for the future...if ever I get a spare decade, I might tend to all of them and get myself fixed up for good at which point I will change my name to bionic or cyber woman. In the meantime, I just try and live as normally as possible....a little bit more difficult right now as I have received the labels "incurable and untreatable" and am still digesting that.

As the choice in dealing with all of this seems to be to cry or laugh, I try hard to laugh...it mostly works but people have told me that, for some weird reason, my humour keeps getting blacker and blacker...;)

cheers
eve

Donna7

09-17-2006, 03:51 PM

Thanks, Tracy, for posting the link to this on the MSN Groups TOS message board.

I'm Donna, in Colorado...
Had an MVA 5/02 with a drunk driver; had a lot of shoulder injuries including a SLAP lesion and torn middle glenohumeral ligament; arthroscopic repair to these and other problems in joint in 9/03. Still continued having problems with clavicular instability, numbness in left hand/shoulder and face, pain in shoulder, shoulder blade, neck, head, arm, clavicle. Also had a whiplash with bulging discs at C5-7.

Like everyone, had numerous MRIs, lots of doc visits, almost all of whom have diagnosed TOS, with some differences as to recommended treatments. Since I live near Denver, I was able to see Dr. Sanders for a consult and have Dr. Centeno for a PM doc, and an excellent neurosurgeon at Pres/St. Luke's.

I am now 6 weeks post op from an anterior cervical discectomy with fusion at C5-7, which my neurosurgeon was hoping would help with some of the numbness and pain in my arm/neck/head. So far, neck spasms are better, headaches gone, but left arm hasn't improved. I just got the collar off a couple of days ago, and that seems to have flared up the shoulder some, as well as some swallowing problems (I've lost about 20 pounds, though...one benefit!)

I'm very thankful to have good doctors and a supportive family. My husband has been so patient and kind... I also have a very good attorney who is helping with all insurance issues (we just maxed out the auto insurance and have to switch to our private insurance) and working on a settlement.

It's nice to "see" you all again! Anybody know how Sea Pines (Alison) is doing?

Donna

astern

09-19-2006, 04:12 PM

haha... TOS humor.

I'm F/44, had bi-lateral cervical ribs and an extra left scalene muscle that decided to start giving me sx at age 35. Diagnosed in 2001, had cervie and first rib resections in 2004 in Denver. (I won't mention the first FAILED attempt at a resection in Florida: mangled a nerve in my arm so bad it had to be removed :mad: ) Sx persisted, so had bi-lateral Pec-minor disinsertion April 2005. Overall only 10% improvement... but a 10% I accept happily.

Applied for SSD/SSI in 2003... still awaiting court date, another year out for GA. Divorced in 2005. Going to try a letter writing campaign to plea for help. Living with family until I win my case. Surviving on State supplied medical care (minimal and poor) and food stamps.

I'm super-glad that we are coming back together!!! :)
Anne

gibbrn

09-22-2006, 03:00 PM

Hi all not sure if you remember me has been a while since I posted.... couldnt find braintalk, but glad to be here now!

I had work injury nov1 2002 lifted a patient up from a toilet and injured neck and back .....tos dx by three diff doc's after getting out of the wsib system. was initially allowed wsib then dec 15 2003 they denied me once tos dx. I have since won the appeal and am now approved again wsib. it is more paperwork and fighting.....the usual you all know....

Had scalenectomy and 1st rib resection in July 2005. symptoms all went away until doing physio started in Oct 2006. They increased what I was doing and all symptoms came back....was off all my meds now back on many new ones....Lyrica, amitriptyline, diazepam, flexaril, axert.......tramacet for pain relief....yeah right.....lol

went to see surgeon this week and he said not tos my surgery would have fixed it if it was.....hmmmm guess he hasn't read the failure rate of TOS surgery. Still have vascular symptoms as well as neurogenic......is tos.....he is sending me to orthopedic and neurologist to see if other pathology....hello already done veinogram pre op dx is tos.....getting pi%$#E off any how long story short.......still fighting like hell for pain relief...oh and he said I have chronic pain syndorme!!!!!!!!!

Victoria rn

Jo*mar

09-22-2006, 11:19 PM

Victoria,
of course we remember you!!

so sorry your sx are coming back and surg, won't acknowledge it.

I keep wondering how some of the other long time MIA members are doing, someday I hope we hear from them too.
Jo

gibbrn

09-23-2006, 01:06 PM

thanks for the reply.....still in parents basement.....ok 32 want a life.....:rolleyes:

hugs Vic

nidia74

09-25-2006, 02:43 PM

Well, here's my story...the short version:

Injured July,2002: 2 door size boxes and weighing 120 lbs. fell against my back hitting all of it in entirety including my neck. I went to 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 d/x TOS w/ MRI/MRA Nov/04. 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.
So a week to go for surgery!!

gibbrn

09-26-2006, 01:55 AM

Welcome to the communiy!! We'll try to help if we can!!

Victoria

tied

09-26-2006, 07:41 PM

i drive 2 hrs to go to my old family doc, because it take too long to describe all of my problems to a new doc. she tells me that it's a miracle that i am in such good shape for what i've been through.

it would also take too long here, but here are the highlights.

3 mva's where the car/truck was totaled, one a rollover where i came out of my seatbelt.

3 workman's comp injuries not counting the one with the gag order.

3 toxic jobs, 2 with gag orders.

lots of falls, and a trick leg that sometimes gives way under me.

2 tos diagnoses, but none substantiated by additional testing.

a lifelong sleepwalking disorder that the sleep doctors are calling "alleged". i have broken bones from this alleged disorder.

a retinal occlusion in one eye and multiple minor peripheral blind spots in both. the retinal occlusion is nearly dead center. you can't imagine how annoying that would be until it happens.

high blood pressure.

total hysterectomy 10 yrs ago.

osteopenia.

gosh i am long winded. i also get depressed occasionally, but most of the time i am pretty happy.

i overwork, but i do enjoy my job.

i use a kinesis ergonomic keyboard. it has helped a lot.

i have been a horse woman most of my life and for financial reasons i had to adopt (sell) out both of my horses. i have visitation. i keep my big truck for that day when i can afford to have them back.

i have a very friendly dog and that's most of my social life.

i don't work and play well with others. i guess my social skills aren't up to getting along with (can't use that word here).

really get a lot of support here on this forum and couldn't imagine not having y'all.

gibbrn

09-28-2006, 01:02 AM

oh and I am F/32 in sunny Ontario....lol not for long.....snow is soon to come!!!!

Kpryor35

10-02-2006, 03:58 PM

:) Hey guys

its Kimmie here don't know if you rember me I don't post alott mostly
just watch. any ways Hi Tammera Hope you are feeling well.

I was ina head on closion car accident.
(L) Carpultunnel surgerys x 2
(R) Carpultunnel surgery x3
I have had 2 surgerys on the (R) side scalemenectomy, 1st rib resection "98"
I have had 3 surgerys in my (L) side 1st rib resection, scalenectomy, 1st rib resection Jan. "99" 7 months later. removel of Bone spure, redue
sympathectomy witch was very very painfull I don't recomend it., "2003"

BAck fusion surgery ALIF "2004" digenitive disc. L45-S1
I also had to have a Pota-Cath placed because when they go to draw blood they don't get any. Do's any one else have the same thing.???

Kimmie:)

Kpryor35

10-05-2006, 10:17 AM

Hello flippnout , My name is kim I to go to st.louis I see
Dr. Thompson I have been seeing him there sence 1997
I live in Missouri.

where do you live if you dont mind me asking just wondering. How did your surgery and the Sympathectomy go.?

I had the sympathectomy 2003 WOW!! I wont have that again I don't know what you. But I was in so much pain after the surgery. I have had 2 surgerys on my (R) side and 3 surgerys on my (L) side. my left subclavian artery is so butchard up from all the surgerys How ever I like Dr.Thompson I trust him we have been threw alott.

how ever here is my Email address is you wouldlike to write me. khomeswood34@gmail.com

thanks Kimmie

johannakat

10-06-2006, 11:39 AM

Hi, I just found this board. Well, actually I found the ressurected old brain talk board and then stumbled onto this one.

I have just had a TOS diagnosis, I had an arm injury doing yoga- watch out for poses where you put all your weight on your wrists!!! and after a few rounds of PT and a nerve conduction test, was diagnosed with TOS first in June, and confirmed just a week ago. I am seeing Dr. Sheldon Jordan in Santa Monica, CA. He does a Botox procedure to relax the muscles that constrict, as well as an ultrasound procedure to do the actual diagnosis....anyone else know of or work with him before?

I had a right scalene nerve block about 1.5 weeks ago...was not forewarned about how much it was going to HURT...yikes. But I am starting to feel better. Just trying to gather as much information as I can to make sure (with the docs help) I get on the proper treatment path.

Glad to have found this place, I am a little confused about the two forums, but I guess everyone is over here now?

Nice to meet you all,
Johanna

DDayMBB

10-12-2006, 06:49 AM

That's Right....work Comp Is Bs!!! Now Denying My Meds As My Adjsuter Indicated That My Pain Meds Would Not Be Denied...she's A Lying *****

Wow Laura, I have never seen you so vocal so to speak... However I do agree with you about WC and just how frustrated they can cause one to be. I have been providing my own health care and meds for the last year waiting for them to step up and take responsibility that is due! I can not understand how you get injured on the job they hire a "PLEATHORA" of ATTORNEYSto go to bat against me and my ATTY. I would LUV to be back at work, though it is not going to happen at this point and time!!! I can not really drive at this time and when I do it is around my meds and usually under 15 miles... not like I can jump up in my truck and be griping and slamming a 10 speed around than pull a 200 + pound hose around... as far as working in the office... I have my good days and bad as far as typing and not dropping stuff... can see them firing me for not being able to produce. Also my Dr. has placed me on such limitations so it does not progress to much further before I am able to get fixed what got messed up on the job i the first place! I screwed up, playing it tough instead of going to the ER that day... than again on 4/1 was taken over by a major corp and the accident took place on 4/2... I heard they had a zero tolerance policy on accidents, than dealt with their doctors that were a joke seen one of their PTs and on the second visit he doubled my pain oh heck I can go on but it is not going to change anything taking place also starting to REALLY cramp up! I do not know where I am headed though hope all is well with everyone:)

Mark-N-Goober

Stardust

10-12-2006, 12:19 PM

Hi and hope everyone is having a low-pain day!

Wanted to respond to Johanna's question about Dr. Jordan. I haven't seen him myself, but I remember that several people on the old forum had good things to say about him. They seemed to think he understood TOS and that he was "good with the needle." :) Sorry you've been diagnosed with TOS, but welcome to the forum. You've found a great group of people with an incredible wealth of info. I know I would have been lost without all the info and support I've gotten from the people here and on the old forum.

David K.

10-12-2006, 07:07 PM

Hello Everyone,
I'm 4 months out from my second surgery. I had the rib removal and all the scalline muscles. Dr Avery did great work! I have been denied therapy wich has been a set back. I was doing water therapy and that was the best it really works the upper body and strengthens the core. It will be about a 12 month recovery and then I move on. Take care :)

johannakat

10-13-2006, 12:05 AM

Stardust- Thanks for the answer. I was a little worried when I didn't see him on the reccomended doctor's list. He does come highly reccomended by my ortho (and himself...but in a very nice way!), but I have been unable to find much about him elsewhere.

Also, I saw him tuesday and am scheduled to have the Botox injections on my right side next week. I am a little nervous- trying to make sure it is the right thing to do, but at the same time anxious to get on with it.

He does all of his needle work with EMG guidance I believe..which is one of the reasons he is accurate.

Thanks for the welcome : )

annhere

10-13-2006, 12:13 AM

Hi David,

I'm set to have my 1st rib removed on my right side due a severe narrowing
(only 6mm & 7mm on the left). I had a neck fusion in 10.2005 it helped a lot with my neck pressure, but as you know with TOS there horrible pain. I'm glad to hear you had surgery with Dr. Avery.....Can your tell me more? Did you have a MRA/MRV test prior? How long were under his care before his suggested surgery? What is your history....

Thanks for your time.

Ann

nidia74

10-19-2006, 07:55 PM

hi there.
2 weeks post-op...Oct 4th.
I'm struggling because of a lot of swelling and still a lot of pain. I was under retractor longer than expected because Dr. Avery said it was really quite a mess in there. oops!! My narrowing numbers are/were 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 but I've made huge progress strengthening. I'm very tired and wear out easily but am doing stretching exercises every day. Just going to be slow!!
I had my first out patient PT appt today 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. He obviously cares about his patients...and not just those he does surgery on.
Nidia

Dolfinz

10-28-2006, 07:46 PM

Hi all,
My name is Valerie and I have just been diagnosed with a Subclavian Compression on the right side::) Artierial TOS and such.. I am so glad to see a new site .. miss ya all !

Ciao

dabbo

11-01-2006, 04:36 PM

Hi all- glad to have stumbled across this site too - I'm a 25 y.o. male, docs think I have TOS - thankfully, only on the left side. Constant pain, numbness, tingliness, weakness, etc. I do get some, albeit brief, relief from the nerve blocks. I've been trying to think of how this all happened, and can only think that its another 6.5yr old injury (mar 2000) from weight lifting- My shoulders had rotated/drooped EXTREMELY far forward. I tore my labrum (left shoulder), which went undiagnosed for 5.5 years or so. I finally had that taken care of this past march. Lo and behold, 5 wks later, i noticed constant numbness and pain in my arm. Initially I wrote it off to the shoulder rehab/surgical nerve block, but it didn't go away :mad: . I also realized that I had some of the same pains 1yr ago, and I just attributed them to my other injury. Saw 2 neurologists, was referred to a pain management doctor (top-notch guy, in my humble opinon ). He thought it was brachio-plexopathy, continued to treat me, while referring me to a thoracic doctor, who said it sounded/looked like TOS, and then HE referred me to another neurosurgeon :confused: . My pain mgmt doc told me today that no one was to cut on me until i had a BARE MINIMUM of 2 opinons (exluding his) - that raised my respect for him. Thankfully I'm still able to work, but going to the doc/pt (and never after or before my long work hours) is getting tiresome. I know it could be worse. Sorry to ramble......

oldsman2

12-19-2006, 03:02 AM

Man o man where to start.

01/2003 started having numbness of upper extremities while working overhead
made several dr. visits to finally get a name and DX for it. Only took
18 months.
08/2003 Dx'd bilat. C/T and Bitlat arterial thoracic.
09/20/2003 removed from work for redue of right C/T and birage of Physical
therapy for Tos. amoungst the nightmare of tests emg/ncv's
goes on for along time until 2004
10/12/2004 all treatments and therapies stopped due to complications its has
caused medically suspended from work till further notice finally.
11/08/2004 right 1st rib resection performed with positive results no therapy
given
12/09/2004 left 1st rib resection performed with bad results no therapy given
12/24/2004 unable to take anymore of me hurting wife leaves me.
01/06/2005 still having complications to left side and no ideas from dr why.
02/14/2005 with improper care and lack of if attempted suicide for both
physical and emotional pain.
totall attempts number 4
the pain in the left is still present to this day and has caused me all sorts of grieve. the last attempt on myself was june 30/2006 and left me in the hospital for over 2 weeks one week was spent in ICU. dont remember much of the time..
finally got the help i needed from pshyc dr's. not that i trust dr's anymore thou.
10/10/2006 1 week stay in hospital for a t4 or t5 epideral 750 ml of bupovicaine pumped in my arm. stopped pain for 3 days after it was removed

now waiting on dr for the installation of some type of electronic device that is supposed to interrupt the pain signal from my arm before it goes to the brain
still fighting with w/c and ss lawyers. have not gotten a pay check since sept 20,2004 its sad to be living at home at the age of 34 with parents.

chris

siccy

01-17-2007, 01:56 PM

Hello to all I didnt post much on old forum .TOSER/RSD .99 dx repetative strain.01 rib resection with sypathectomy.05 spinal stim implant.

gbsb

01-17-2007, 02:21 PM

Hi folks!
I just found this place while searching TOS and SLAP Lesion.
In 2005 I was in a phase at work where I was lifting several thousand pounds a day in 30 - 50 pound increments. Much of this was removing 50# bags from pallets, placing on a cart, and relocating to shelving or piling them up in the work area.
Anyway I had pain in my shoulder after lifting and throwing a 50# bag on to a shelf at or above my head.
As usual I just dealt with the pain and hoped my day off would help if I rested.
Nope it just got worse.
I tried to report it to my managers but they were trying to get me to admit to doing it outside of work and to have my regular medical cover it.
Well, after some persistance on my part they finally got the work injury paperwork going and I went to see the Company's doctor's office that they contract work related medical stuff out to.
That doc said I had a strained shoulder.
I insisted on seeing my own doc and she recommended MRI and a follow up with a shoulder surgeon.
Work didn't want to deal with the restrictions my doc gave me and insisted my doc put me out on disability.
Since then I've been on WorkerComp.
Had three MRI's. One with a dye of some sort. Two were on my shoulder and one on my neck.
The shoulder ones showed some slight tearing or impingment. In the neck it indicated some degenerative disc disease.
The shoulder surgeon deferred from operating on my shoulder because he felt that my symptoms indicated TOS.
Went and saw a neurologist and I guess it was determined that my problem was vascular. So off to the vacular surgeon.
Vascular surgeon indicated I had three issues and he felt TOS surgery would be appropriate and said I might even get relief for my shoulder pain which is what I wanted releif from to begin with.
To make a long story short we agreed to do TOS surgery.
Somewhere in this process the Company and it's W/C insurance carrier were messing with me so I got an attorney. My attorney and the firm agreed to take my case. I'm not sure why as they will only be paid if I get some sort of settlement or pay off.
My TOS surgery was in October and at this point I can say I am almost over the pain from surgery but nearly all my symptoms are still present and my shoulder feels worse.
Followed up with vascular surgeon three time now. More meds and PT.
He has me going back to see shoulder surgeon in a several weeks and then another follow-up with him.
At this point I wish I would have known more about the TOS procedure. I'm still not sure if I'd do it again given a choice.
The surgeon seemed like he knew what he was talking about and my symptoms made sense.
Supposedly the vascular surgeon is one of the best at it in the N.E.
The only good thing is he didn't freak out when I told I actually felt worse.
I thought for sure he was going to tell me I'm nuts.
I think I'm going nuts.......these pain meds aren't helping the pain much and I think they are making me depressed.
Who knows?????
I'm looking foward to being able to read about other peoples experiences with TOS.
Take Care!

lovetofish

01-24-2007, 01:17 PM

Hi all I am new here m/51 Kentucky. I have Bilateral Thoracic Outlet secondary Carpel Tunnel. I am a Sr. Maintenance Tech. on work restrictions. No pushing, no puling, no pinching, no griping, no repetitive motion and I am not to raise my arms above the level of my heart.

I found out in Dec. that I had all of this going on with me. I feel lost, I don't know what to do about work. I set here and type this and my neck is hurting so bad that I can't feel the pain in my arms and hands. Work has been trying to put me on modified duty but everything they give me to do causes more pain.

I’m fighting with work comp.

I have been on Neurontin and it helps some but I am gaining weight like crazy from the meds or lack of exercise from not doing the work that I am accustomed to?

I have always been in control of my life for the most part and now I feel lost in not knowing what is next.

Thanks
DA

Shelley

01-25-2007, 12:08 PM

Welcome to our TOS family Love to Fish:welcome_sign:

It was great talking to you last night in chat!

Hope you are feeling better today.

Send us some pics of your new pontoon boat.

Good luck at PT today :Good-Luck:

cindyj

01-26-2007, 11:33 AM

Hi all, I used to stop in at the old forum once in awhile to read.I was so tired of health troubles that I couldn't stand the thought of typing them out.I am 40 and have 2 grown sons and my 1st grandchild on the way in may. My hubby and I are both unable to work due to health. Just to touch a few troubles i have dealt with bladder cancer on and off for 14 years , but have benn clear for 4 years so far this time.I have severe fibromyalgia,herniated lower disc,sciatica and several other related troubles.I was finally diagnosed with bi lteral TOS 2 years ago and have been on a surgery wait list ever since. I just got a phone call today telling me my surgery will be on tuesday jan.30th!! I am really scared right now.I had myself ready for the surgery 2 years ago but ive been waiting so long that it was a shock to get this call today. I am having left side rib taken out and muscle bands cut.I am supposed to be having surgery on my left arm for a shortened tendon on feb.9th.So now I dont know what will happen with that surgery.I have beenhardly able to use my arm for many months and am losing muscle mass.I am hoping that the TOS surgery might help my am problem too,but don't know if it will with my tendon shortened.I know alot of you have had surgery, did it help??I don't even have a clue how long I will be laid up recovering .Dr. Bethune in halifax,nova scotia, canada is doing the surgery.Does anyone have any advice for me ? I am scared!! thanks for listening cindy:eek:

gibbrn

01-26-2007, 11:51 AM

I hear your pain and frustration as well as your fear.

I too have had the surgery and am in canada...ontario....so I hope we can help to answer your questions. If you post a thread with your questions you will likely get a better response than just posting here...I will move your post so others will answer and give advice I hope you don't mind me doing this...

take care...here always for help just private message or email me with questions or concerns we are a great bunch of people and we all love to share in each others troubles so welcome again and lets see what we can do to help to get rid of your fear!!!!

Love and hugs,
Victoria....gibbrn

Starla78

01-27-2007, 01:31 AM

Just thought I would say Hi and re-introduce myself. My name is Shannon and I use to post under the user name Chlobugsmom. I was living in So CA and am now in Boise, ID.

TOS is still raging only difference is that I can't find a doc out here to save my life....Mine is due to many hours of work (hairstylist) with no breaks. I am a surgical canidate but have refused up to this point. I think that's about it.

Hope everyone is doing as well as can be expecting.

Smiles, Shan~

finz

02-01-2007, 03:57 AM

Hello kiddos,

I am a 42 yo TOSer from the Boston area, battling with WC and constant pain. I've just found this place from a link at Braintalk. Happy to find you all again.

lisagenee'

02-01-2007, 03:26 PM

My name is Lisa, I'm 23 and have bilateral tos. I had BL scalenectomy and left side first rib resection a year and half ago, and am going to have my pec minors removed in a couple weeks. I live in PA but have to fly to Denver..maybe i'll get snowed in!!! Looking foward to meeting you all...Take care!

----
"The world need dreamers and the world needs doers. But above all, the world needs dreamers who do."
--Sarah Ban Breathnach

gibbrn

02-01-2007, 05:56 PM

Hi Lisa,

Welcome to the forum. I hope that you get the information you need here there are a great bunch of people here and I hope you'll find we are all very friendly..... any info we can give to help you will gladly give it ........any support you need for here for you...... we understand what nobody else truly does in your life!!
So Welcome and please feel free to post anywhere and lookup information!

Love and hugs,

Victoria

lisagenee'

02-02-2007, 06:33 PM

Hey Victoria,

i was born in Ft. St. John, BC, but moved to the states when i was young. Good to know a fellow canuck tho!!! :p Yes, its really nice to meet so many other tosers, its easy to feel like the only weirdo on the planet!!! Seems like an uber-supportive spot.
Later gator,
Lisa

tlsanders

03-29-2007, 07:08 PM

After 7+ years of chronic, often acute and debilitating, pain I was told I had TOS and what it was and I sat down and cried. I was at a hand surgeon because I was supposed to have carpal tunnel surgery after years of wearing braces with no relief. The surgeon told me I didn't need surgery the carpal tunnel wasn't that bad and then he proceeded to move my arms around and check my pulse and stuff and finally I am on the road to being flare free. Until February 2007 I had never heard of TOS and I finally convinced my general practitioner to trust me and refer me to PT and a physiatrist. Now to find out there is an entire community of people who don't think I'm crazy I think I would like to sit down and cry again.

Tempus

04-01-2007, 11:47 PM

Hello all. I've been unknowingly suffering TOS symtoms for many years. I've made many attempts with different docs to find out what was causing the pain in my left armpit and down my left arm over the years with frequent fears of heart problems or arterial damage. I had an episode a few days ago that I thought may be a heart attack as my left armpit and arm suddenly became excruciatingly painful. I could feel every beat of my heart throbbing yet I could breathe ok. I've had a lot of pain in my life and this was right up there with a smashed sciatic nerve and shattered disks. A trip to the emergency room followed by a night in the cardiac ward left me with an ecstatic group of doctors (apparently a proven diagnosis of TOS is rare) and a whole new page of worries. I'm glad my wife found this place for me as I've already taken solace in the words of many of you. I'm sure I'll get around to posting my questions soon but if you all don't mind, for now I'll lurk a bit.

Thanks for being here.
B

comfortamI

04-03-2007, 11:38 PM

Hello all, my first day on and just want to say after fighting with doctors and lawyers re TOS or not I finally after 9 years received approval for treatment (after 2 Rotator Cuff Surgeries and entire spine treatments over the years due to a workman's comp. problem) Just want all to know that I was recommended by Kerlan-Jobe Orthopedic Group and Dr. Vernon Williams to be exact to see Dr. Jordan. I was not too anxious for the first treatment for injection in scalene muscles ? After so many years of fighting workman's comp and firing attorneys that would not listen, I WAS amazed how much better I felt. I REALLY did not want to have Botox injections (if so being in So. CA. I would have considered my face if not in soooo much pain) Dr. Williams finally convinced me and after fighting Workman's Comp throught the Courts, I received approval.

I must tell you that Dr. Sheldon Jordan is fantastic and that was "before I checked him out on the internet." I was unable to sleep laying down for many years due to TOS in both sides and left dominant and being left sided. For so many years I HAD to sleep sitting up and still in extreme pain with other body parts and with help of Lioderm patches (thank goodness they are available!!!!) Its been 2 months and of course I still have pain but with activity from a 8-9 its 4-6 and I feel that is fantastic and able to sleep again lying vertical.

Any questions please contact me, comfortamI because I am constantly looking for a better way to exist and live and be happy. (Even though I have constant pressure and refussal from Workman's Comp)

minnnimee

04-19-2007, 02:36 PM

I have what I believe is TOS. I am so glad I found this web site, but scared from all the things I have read. I kinda figured open me up, stich me back together and I am good. It doesn't sound like surgery is the cure all though:confused:

A quick history. I have had a tightness on the left side of my neck for a few years, making it difficult to hold the phone ear/shoulder. Also couldn't crack neck to relieve pressure on the left side.
Didn't pay much attention to it, just compensated.

At Christmas time, I was putting a heavy tray of lasagna into the oven. When I stood back up and took a step, I got this sharp pain on my right side- sort of in the middle of my body but near the inner rib area. It felt like labor contractions and took my breath away. The pain would make me groan gutteral, like childbirth. Each step I took to get to the couch resulted in this very same pain. Once sitting, it continued with even a minor movement, for maybe about an hour.

Then it just stopped. It was gone. Weird, I thought. But over the next couple of days I started to get a pain near what I would have thought was my kidney- lower rib cage right side to the back, brother said- kidney stones, from the moment it happened. Pain seemed to confirm it. After a couple of days, with the pain getting more obvious, I went to the E.R.

They did a CT Scan, said no kidney stones, muscle sprain.
I didn't buy it, but whatever.

Next day, Hospital calls- saw mass on kidney- get to primary dr. -asap.

Go to primary dr., sets up mri and blood tests. Then proceeds to go out of country for a month leaving me wondering if I have cancer.

Finally get report back, kidney is normal. Does show degenerative bone something..

Dr. says I dont know where to send you. Gives referral to gastro, and urologist. I know neither is what I need.

Pain getting increasingly worse. Back pulling and burning when I walk. Goes from shoulder blade to shoulder blade across and down. Have to take constant sit downs to alleviate pain. Can't hold pocketbook or anything else with weight while walking.

Can't walk for more than a couple of minutes- Pain goes from zero to 10 quickly. Can't shop for groceries- impossible.

Can't stand to do household chores for more than 2-3 minutes. Cooking etc..all next to non existent.

Work at desk in office, so I am good for coming in and staying put.

I think left shoulder had started to give me pain before the incident- I remember thinking I strained it by trying to open a locked window at the office ( thinking it was unlocked :eek: )

Now, arms go numb when trying to sleep at night, or when holding phone to ear. Left side especially.

Can't get a good nights sleep. Teen daughter is assisting in day to day things- sometimes even need help unhooking the bra.

I am thinking something snapped that day over the oven, and has gotten progressively more painful.
Thoughts anyone?

bigpede

05-09-2007, 01:39 PM

Hi, Im new at this. my name is pete. I had rib ressection on right side two weeks ago. Phrenic nerve was [damaged] now i have paralyzed elevated diaphram on right side. Anyone else have similar[complications]?

beckyb810

05-10-2007, 01:01 PM

I'm Becky...I used to post a long time ago on the BT forum, but hadn't been on here in a while and discovered yesterday that it doesn't exist anymore. Anyways - my story (the short version) is that I got a blood clot in my left shoulder, spent a week in ICU while they broke it up, only to have it re-form within two weeks. Several painful months and several clueless specialists later, I ended up with the wonderful Dr. Julie Freischlag at Johns Hopkins, who officially diagnosed me with TOS (both neurogenic and venous), and did a first rib-resection and scalenectomy. I went through 3 months of rehab following the surgery. I am now 3 years post-op, and have no problems or symptoms to report. I wanted to share my story since I know that most people who have been successfully treated don't end up posting on forums like this. :)

LA31

05-13-2007, 12:54 PM

Hi, as many of you know, I am Annie. My long but hopefully successful story is that I was diagnosed with whiplash after two car accidents in 99 and 2000. I had episodic back and neck pain on my upper right side, neck,, shoulder, and ribs, for the next eight years. Usually, the pain was not bad enough to prevent me from working, but it did get very severe at times.

In October 2006, I turned my head to the left quickly when the phone rang in the morning and woke me up, and I felt a sharp pain where my right side of my neck meets my shoulder. Ever since then, I have been debilitated and running from doctor to doctor. Got every test that you could possibly imagine. Finally, in January was diagnosed with TOS. Tried physical therapy, shots, acupuncture, and pretty much everything else you can imagine. Have been unable to work, drive, and was pretty much bed-riddden since December.

Finally decided to get surgery with Dr. Sanders in Denver three weeks ago. During surgery, Dr. S. found a 1 cm long extra cervical rib that was pressing against my C7 nerve root in my spine. No doctor had seen this extra rib in any of my tests. However, I did have three abnormal EMGs showing abnormalities in connection with the C7 nerve. Dr. Sanders removed that extra rib and also performed a scalenectomy and a pec minor tetonomy.

It was and continues to be a hard recovery but I am doing so much better. I cannot tell you how happy I am. I will continue to post on this site in the hopes that my story will give others hope and also that they can learn things from my case to help their medical case.

This site and the wonderful people on it helped me get through the really hard times and gave me some incredibly helpful information.

As always, feel free to PM me if you'd like to discuss my case. I hope this information can help others.

All my love, Annie:grouphug:

MelissaLH

06-17-2007, 03:14 PM

Do you think only one year of trying physical therapy is sufficient to demonstrate the need for TOS surgery?

In the summer of 2005 I was rear-ended and sustained a whiplash/hyperextension injury. I just had a lot of neck and shoulder pain for about three months, and then for the next year I had periodic problems with my neck muscles locking up any time I would overextend myself such as with exercise or just trying on too many shirts at a clothing store!

I was diagnosed with thoracic outlet syndrome in the spring of 2006 when I suddenly developed what was thought to be wrist tendinitis bilaterally. Treating the wrists alone didn't help, and strengthening my upper body only made my arm and hand pain worse. By resting my now spindly upper body, I have managed to get my hand pain under control, though any time I try to build upper body strength I'm spiraled right back into severe pain. I do see a physical therapist for myofascial release and craniosacral work, which helps somewhat, but doesn't help me strength-wise. I haven't been able to type full force for a year, though I do have to type a bit when my speech recognition software doesn't work properly (I have to Dragon NaturallySpeaking version 8). I can't drive, or grasp for long periods of time. I have finally been able to do the dishes for the last couple months, and I'm just proud of that! My hands hurt every day regardless, and a lot depends on which way my head is pointing or leaning.

I went to see a thoracic outlet specialist last week and he diagnosed me with arterial and veinous TOS of my left arm and arterial in the right, both of which meaning that I do have a nerve compression which seems to be my main complaint. He suggested having my first ribs remove as well as a scalene muscle severed on both sides. I'm really afraid of the surgery because of the recovery time, it seems from a lot of people's posts that it takes a LONG time and I have to get back to college. Any advice? I might post my questions elsewhere, just in case this doesn't get read. Thank you!

David K.

06-19-2007, 01:25 PM

Hello Everyone,
A little bit of what I've gone through......I noticed numbness in my hands and arms way back in 1999. Me being a construction man (drywall) went to the doctor "Kaiser" they did a EMG and said it was in the good. I went back 6 months later with the same even worse and more often numbness they said the same, you must of fallen asleep on your arm. Ok 2001 my right index finger froze in the bent position, this was caused by Pronator Syndrome ........5-31-2001
that was the last day of work and yes I'm still off. I got the best Attorney in the area Mr. Boxer in Oakland his office the best Workmans comp butt kickers in the area. I had my P. S. operated on and fixed. Then the doctors started to take notice to my numdness mostly from the therapy'st notes. I had both shoulders repaired By Dr. Halbrecht in the city. My arms still going numb....
He sends me to Dr. Avery magic he is a Thoracic Outlet Syndrome Specialist and within a few minutes he said bi-lateral rib reduction and scalene muscle removal....5/2005 left side....5/2006 the right. Dr. Avery did a great job I
feel great I'm still working on strength and breathing. Workmans comp has fought me the hole way. It looks like very soon I will be released for work. That was a fast version of the 6 years for me.

horsemommy

07-05-2007, 02:36 PM

Hello all,
I've recently been diagnosed with TOS (officially) although I've told the docs for 3 years that I have it,LOL. But hey, what do WE know about it????? ALMOST EVERYTHING! ;)
I own a horse farm in NJ and live with my husband and 2 grown daughters. My hubby is in the Air Force and flies Kc-10 refueler & both my girls are in college. I work for vascular surgeons besides on our farm. I give lessons and still ride competitively. Fortunately riding doesn't require much hand/arm strength just alot of leg pressure, balance and good posture. So riding is actually therapy for me :) . What is good for my TOS is all the cleaning involved in owning a farm!
I was injured in an auto accident 10 years ago and have been getting steadily worse over the years. But what push me over the top was 3 years ago I was bringing my 1000 lb, gangly 18mo draft horse in from a snowstorm and my dog tripped me. Well, when I fell, I knocked skippy's feet out from under him and he pancaked me onto the cement floor. I was lucky he didn't kill me! I walked away with a couple cracked ribs, costochronditis and a major concussion. Only to discover the costochrondritis was masking alot of the TOS symptoms. Once the costochronditis calmed down, the TOS was very apparent. That's what started my long quest to proper diagnosis. I've done chiro, pt, massage, you name it. Meds are what get me thru the day now.
~Now here's a funny twist to the whole thing. My DAD had TOS from an auto accident 30 years ago and had surgery to correct it 28 years ago! same arm, same exact problem! THAT'S how I knew what it was. Personal experience.
(Just convincing the docs to listen to me!) My dad had surgery and hasn't had a problem since, so I'm hoping for the same!:)
Thanks for "listening" and having a great support forum.
Mary Lou

Karen

07-13-2007, 06:34 PM

I have visited this forum several times over the past year or so, but never posted anything. I always found a lot of comfort in knowing that I am not alone!! And that I am not crazy!! I have had TOS for at least six years that I know of, but four years of that was without a proper diagnosis. It is all a big, long story full of doctors that didn't listen - I am sure everyone else has had the same experience - and ended up with one who didn't give up!! I have had brachial plexis surgery on both sides, radial nerve surgery on both forearms, and had 6 denervations in my back. I am done. No more surgery. The pain is still more that I can live with, and the weakness in my arms quite severe. I finally quit my job last February. Since then, I have felt somewhat better, but only because I have pretty much given up everything that I enjoy. I still have a LOT of bad days, but at least now I have SOME good ones. I still get depressed a lot, really wish I could work!! It is a real comfort to know that there are others out there that have the same problems!

hairdresser

07-17-2007, 12:12 PM

Since then, I have felt somewhat better, but only because I have pretty much given up everything that I enjoy. I still have a LOT of bad days, but at least now I have SOME good ones. I still get depressed a lot, really wish I could work!! It is a real comfort to know that there are others out there that have the same problems![/QUOTE]

|Hello Karen it's not uncommon for us to feel this way after an injury. Thought this article might be of interest to you or anyone going through the grieving process. It's important for me to tell you that you are not alone. Take care.:hug:
http://www.madd.ca/english/services/after_injury.pdf
http://www.wpic.pitt.edu/research/depr/grief.htm
http://www.archrespite.org/archfs21.htm

VixSparebitz

08-05-2007, 08:44 PM

Greetings fellow TOSers

Vixen here from Hamilton, Ontario. Finding this forum & such a wonderfully supportive network of people with the same things is nothing short of miraculous for me…..thank you for having me.

Have spent quite a few days, literally, scouring through the 39 pages of the forum & my brain feels SO overloaded, yet I’m relieved to find kindred minds, so much education & help as to what I really need to get a grip on living life with TOS. You've given me SUCH and education, my brain hurts right now...LOL

Not sure where to start to tell you about me. I’m one of the rarer birds in that I’ve known about & dealt with having Cervical Ribs for 37 years (we discovered them & their probs back when I was only 13 and just becoming a budding teenager). They are bilateral with the left side being larger & more symptomatic.

Back in the 80s my symptoms progressed to the point where they did a rib removal in Alberta. For many years I naively thought they’d removed the errant spare rib on the leftside. Only found out last year that it was actually a rib resection of my first rib & not the culprit at all.

In January ’03 I was in a rear ender accident & they started treating me for whiplash. Treatment went fairly well with physio/chiro for the near 4 months that the insurance company approved the treatment plans. But since then I’ve fought to try to get the insurance people & the medical field to realize there was more going on here than just that.

My family doctor (who I only met when I went to ER after the accident) took me on, as finding a physician in Ontario is no easy feat, sadly. So I was glad to finally have someone regular to tend to my medical needs. At the time, it didn’t occur to me that any of this “rib stuff” would be rearing it’s ugly head again. I also didn’t think to question this new doctor about his doctoring theories. Turns out we didn’t see eye to eye on many things regarding my treatment. …..chiro & pain management being the two major issues why I quit seeing him over a year ago & quit taking the few meds he’d prescribed, as the depression meds just made me emotionless. I truly think this man thought I was just crazy & making so much of all this up, as he didn’t understand it hardly at all, so surely I was some paranoid hypochondriac or something. He hated doing all the insurance/legal paperwork that was becoming evident with the lawsuit & asked me to stop having my lawyer send anything to him.

I had before quitting this Dr, gotten him to refer for some neuro tests, which proved I did have something there, which then got me a referral to a vascular surgeon whom I saw last year a couple times. Of course all this guy wants to do is cut, he is a surgeon afterall, and tells me the only future I have is to remove the left cervical rib…I’m not convinced.

Now I’ve known the value of treatments like physio/chiro/acupuncture from treatments I’ve had over the years. I knew that my pain management needed to be dealt with, my physical condition could be helped with other methods, even if they were only a bandaid solution (as he called it) ….but I wasn’t ready to agree to surgery quite yet, when there were other avenues.

Back 37 years ago, when I was only 13 they wanted to operate & only gave me 50/50 odds of coming out paralyzed to some degree. Now in the new millennium, surgeons have progressed to him giving me odds of like 17% these days. Well, the fact is, I just turned 50 & wasn’t about to willfully succumb to going under the knife while I still enjoy some use of this arm. And I know what things I need to keep in optimum shape to deal with it all. I just can’t get the doctors/lawyers/insurance people to admit that this is all very real & I may just have an idea of what’s going with my body & what it needs. I have lived with it for a lifetime afterall. I just need them to let me get the treatments & have a life, as limited as that may be.

Been off the meds for16 months…..have had NO financial support since the end of ’05. I’ve now atrophied/progressed negatively to such a degree with the chronic pain that I’ve become very depressed/near agoraphobic. I’m sure the insurance company thought (probably hoped) I’d just crawl in a corner & die/go away, but now that my savings have been exhausted, my mental state’s deteriorated terribly with this chronic pain & non treatments of any kind, I’m facing losing my business, my loft & everything I have. Social Services isn’t any help as I’ve not been “labeled” as disabled. I physically & mentally can’t take care of myself anymore in this state & yet, thanks to you's, I have found the strength & clarity to grasp my last will to fight all this. I may be in the biggest flare of my life, but I’m still kicking.

I have been the victim here in so many ways. My early years in suffering from TOS has kept me very naïve but now as I approach about as low as I ever thought a person could get, I found you angels. <biggest group huggle imaginable> :grouphug: I can’t thank you’s enough.

You’ve equipped me with knowledge & the willpower to fight for a better life. I wanted to introduce myself quickly while I still have a net/phone connection. But mostly I wanted to thank you’s for the empowering me with what I need to save myself. I may be offline for a while, but dangit, I’ll be back…..you’ll probably get sick of me.

I’d love to hear from a few of the Canadian girls with any advice they may have on how to best crawl out of this hole. I need to know about good therapists, pain doctors/clinics, government programs that surely must be out there for someone such as I suffering with all this....I will now begin to build a strong support team. Please feel free to email me, as no matter where I end up, I’ll be checking my emails from time to time, even from the library if that’s what it takes.

Again, my sincerest, most grateful THANKS!!!!!!!!!!! :hug:
(and I’ve really rambled on, sorry)

Vix (real name’s Becca, but most people do call me Vix in real life.)

DiMarie

08-05-2007, 11:25 PM

Hi Vix, i was just catching up and saw your post. Say hello on the main forum page as sometimes it is months until I stop in the see what is up on this thread.

Nice to meet you but so sorry that you have this monster to try and lock in the closet.
There are several, well, more then three Canadians on here!
WElcome,
Dianne

Sea Pines 50

08-06-2007, 04:16 AM

wow, vix, you are gorgeous! i am so sorry you are in so much pain. afraid i can relate only too well to your story but am so glad you've found us. and under tort law of course it makes NO difference, the fact that you have congenital C-ribs or a history of TOS insofar as any settlement or adjudication of your case goes re that car accident. so make no mistake about that.

i am sure some of your fellow canucks will be chiming in here soon enough and, hopefully one of them will know a good lawyer to steer you to with a good working knowledge AND a track record of winning TOS cases, becca. it's tough but it can be done. i'm just a stupid american and don't know the laws up there or the social services systems, etc. but gosh you're in a tough spot, it sounds like. so hopefully GIBBRN, JAMY, RACHAEL, MUCKER, HAIRDRESSER, and others will see your post up here on this thread and be able to advise you either on the attorney front or on the insurance or assistance front.

at the very least, one of us yanks (not me, i'm a near computer illiterate...:D) can at least copy your wonderful introduction post down to the main part of the forum where more members and lurkers alike will see it, vix. that way we can get you the help you need... and just as key - you have so much to offer here, with the life experience you have with the TOS monster...:eek: would that it were not so!!!

but i do have some information for you, which i gleaned off of the sorehand list (http://www.ucsf.edu/sorehand/), comprising responses to a fairly recent post from an ontario librarian suffering from an RSI who was desperately seeking medical tx. a woman named catherine fenech responded (catherine is the founder, apparently, of international RSI awareness day), as did a poster named peter ryley. i believe both of them live in the toronto area. at any rate, dr. heather tick is very highly recommended and apparently patients come from all over canada and even europe seeking tx with her. her website addy is: http://treatpain.ca/rsi_clinic.html and she is the director of the RSI clinic there in toronto. dr. chong was also mentioned, although it is thought that he is starting to restrict his practice almost exclusively to musicians at this time. he does intramuscular stimulation (a form of acupuncture) using lidocaine. dr. tick does it without lidocaine (dry needling) which according to dr. chan gunn is much more effective in getting the trigger points to release. peter came up with dr. gordon ko (http://www.musclepainrelief.ca/html/dr__gordon__ko.html) out of sunneybrook hospital, who also has an office in markham - but just be aware it can take a good 6 months to get an appointment with him.
{ try this link to get above info - http://www.musclepainrelief.ca/ }

if you sign up for the sorehand list (which is free) you will have access to its archives. sharon butler subscribes to that list and you will see her post every now and again; her website i believe is www.selfcare4rsi.com or something to that effect. or just google her name and she should pop up that way or you can use the search function on the TOS forum (upper righthand portion of your screen...).

now i do realize that your TOS was not caused by a repetitive strain injury, becca. mine was not, either. but don't let that put you off. the sx and the tx are the same. just as the surgical interventions are the same (but we ain't goin' there yet, right?) and good for you for going easy on the meds, too... but please don't be a hero. i just hate to think of you suffering unnecessarily. really wish you the best with finding a most excellent doc and PT -- STAT!!!

i have lived with a raging case of true neurological TOS since just a few years out of high school, which unfortunately was misdiagnosed for many, many years before i finally found competent docs and the right PT's and other types of practioners to start getting real help (i'm a few years older than you now:rolleyes:). so i know what you're talking about with the out of control pain levels, the atrophy and the nerve damage, jax. this takes heart and it takes courage to get through. but the way i look at it, if TOS is progressive, then so are those things, right? they gotta be. i can tell how strong your spirit is.

ice (if you can tolerate it) and a sense of humor don't hurt either. if there is any way for you not to lose that internet access right now i think it's going to become extremely important. and i know you have a great deal to offer here too. we need you here.

stay close.

"a positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort." herm albright (1876 - 1944)

:thud: :Good-Luck: :Cowgirl: :welcome_sign:

alison
"Be Brave"

gibbrn

08-24-2007, 02:42 AM

I was supposed to be referred to him!!!! Just as I was leaving Ontario of course the recommendation came down for me to see him for botox treatment........wow Alison can't believe you have that site...link doesn't work by the way....:rolleyes:
take care
love and hugs,
Victoria

Sea Pines 50

08-24-2007, 11:58 AM

yeah, victoria - hey if i'm not mistaken that might even have been the one i emailed you about, thinking you might know of some people in ontario that could help the librarian in distress... but the sorehand folks ended up coming through for her in a major way i'd say!!!:)

i think the mistake i made originally in trying to put up dr. ko's link was, it somehow is trying to read the parenthesis at the very end as part of the addy. i didn't realize that at the time though, and knowing it wasn't working, i tried editing it to make the 'underlines' in the addy longer, which also didn't do the trick.

now it's too late to edit it. but if you recopy it with just a single underline in both spaces where that appears... being careful not to let it grab that last parenthetical - i think it might work.

ain't hindsight grand, victoria? mine is at least 20-20!!!:D

but i still think the lady doc got the most votes of confidence and if it were me, i would try her first... in a TOS heartbeat!!! plus which, her clinic looks to be pretty full-service - always a good thang. and no 6-month wait list. what TOS'er can sit around in pain for 6 months... oops i forgot whom i was talking to... sorry about that.

the problem with being on a CP'er wait list for a pain clinic like you, unfortunately, are up there in calgary my love, i believe is that we are among the strongest people on earth. we outlive our co-dependents by a longshot, as well as our docs, our PT's, and the rest of the lot of 'em. so ya truly DO have to wait. it's not like CP kills you (just some dayz maybe we wish it would...:().

oh. i did NOT say that!

fortunately, no one reads this stuff up here!:D better still, victoria, i've a feeling you know what i meant (and you know me by know. i'm kinda sick that way!:eek:)

alison
"Be Brave"

Mimi4

08-24-2007, 07:08 PM

Hi All~ I am guessing this is how I enter into the TOS forum?? I have been in pain since 9/2005 and continued working until 5/2006 not knowing what was wrong. 5/2006 went on med LOA and continued seeing docs at Kaiser for headaches, pain in shoulders, arms, elbows, wrist and hands, my ears started ringing and I have had a hearing loss (now 3), I have fullness in my head when I get up from a sitting position and sometimes from just turning my head. Kaiser did MRI's and found I have a bulging disc in C 5-6 some in 3-4, so they concentrated only on my neck gave me a few steroid blocks but ultimately couldn't find anything wrong with me for the symptoms I was posing to them. They all but thought I was nuts and offered all kinds of meds which didn't help. We dumped Kaiser in 12/06 and Jan. 07 went for my first visit to Kerlan-Jobe in L.A after 2 visits it was determined that my neck wasn't the issue and TOS was suspected. I had a Brachial Plex. MRI which confirmed the TOS. PT is too painful for me so I have stopped it. The docs won't give me meds, only sleeping pills as lying down on my sides is painful and both arms go numb and fuzzy... I most recently was referred to Dr. Ahn in L.A, he wants to do the rib resection surgery, I opted for bilateral scalene Botox injections (if I can get some info on them). I am presently getting acupunture and looking for someone that does medical massage. WC is a whole different issue, it was brought to my attention in Jan. of 07 that I should have been on WC since I went on LOA in 5/06, so I filled and boy did that open a can of worms! Of course I was denied and had to hire an attny. I am anticipating a QME in the near future, all the docs picked were orthopedics???? Shouldn't I be going to a Thoracic Specialist? Can I fight the attny on this?
I don't know what to expect anymore, my body is tired and in pain 24/7, I have no meds, not enough info to make a decision, and frustrated with the docs, WC and the attny!!! I can see why people throw in the towel.
On a brighter note I love this site and have aquired some great info and only wish I had found it sooner.
Any advise or info is greatly appreciated. Sorry I rambled on but nobody gets it except you guys. Thanks! Mimi

Mimi4

08-24-2007, 07:12 PM

My attny suggested I apply for SSDI and I did and have been seeing their docs at my caseworkers request. I now it's short notice but tomorrow I have a "mental exam", yes, a mental exam????
Can anyone give me a heads up on that?
Thanks.

VixSparebitz

08-24-2007, 09:46 PM

Glad you found your way here. As one of the newer ones too who just recently found this great group of people, let me greet you with a welcoming :hug: (carefully given, of course)

Wow, you've been through a lot in a short amount of time in comparison to my own story. And while there's so much that I'm just learning, I can't really offer much advice when it comes to the medical/legal/governmental fields (trust me, I struggle vastly with them all too....think most of us do for longer than anyone should have to). But I will offer one piece of advice that was given to me early on when I first posted to this thread for intro....

Copy/paste your posts over into the regular part of the forum (underneath where the sticky notes & links & this part are) with your own start of a thread....that way more of the great people that wander the TOS halls will have a chance to see it & get to know you & be of such support, it'll blow you away. It sure has me....they are all truly angels & so helpful, sincerely supportive & just better than friends/family because they all understand like no others can.

I wish you all the very best & again, welcome, Mimi :welcome_sign:

thunder92

09-10-2007, 12:25 PM

:winky:Hello all! I am so glad I found this site after a year of no one knowing what was wrong with me. Seems like a great community. I know most of you probably have stories like mine :)

I started having symptoms 1 year ago. My chest muscle would spasm. It didn't hurt. Then my arms starting numbing and being in pain. Then my chest hurt and felt like a bone was out of place. Muscles spasming from place to place. I would wake up at night shaking for 10minutes. I assume a nerve was to blame. They thought it might be my heart but it was not.

That has passed but I still have terrible pain and numbness from time to time. My muscles going into my neck feel so tight and pop. I hate the numbness too and i think it is responsible for my stomach swelling too. I get dizzy and cold feeling in my head at times and forget trying to install a stinkin light or do anything above my head! My shoulders will kill me. My chest is sore to touch and the nerve on my underarm hurts like heck at times too. PT and chiro finally helped relieve constant pain.

The wierd thing is that muscle relaxers and hot baths help the most. Why is this TOS'ers?

Ok, thats my problem. Glad to meet you all!

gibbrn

09-10-2007, 02:01 PM

Hi and Welcome!!

We all do have our stories some longer than others.....you are in the right place! Hope we can help....I suggest starting a thread on the main board to introduce yourself and get help if you need it.....

I too find a lot of relief from heat and muscle relaxants....hence my thought thtat my tight muscles from an injury I got at work lifting a patient up from a toilet (nurse) and hell from then on.

Are you getting the right medical care?? Vascular inquiries to see if it is vascular??? Neurological issues....need neurologist??? Just thoughts...post a thread and we can get on top of some issues
glad to have you and welcome to a great community. We are multitalented and have a vast range of knowlage....so post away and feel welcome...oh and no dumb questions!!!!!!!

love and hugs,
Victoria rn:hug:

mtnmom

10-01-2007, 01:25 AM

I'm new here and pretty new to this whole TOS thing as well. I was diagnosed with venous TOS (effort thrombosis) almost 5 months ago - since then I have been hospitalized, undergone more medical tests, treatments and procedures than I care to even mention and had one rib resection surgery. Funny how life works, one day I feel fine the next I'm laying in ICU. The good news is, I'm fine once again.

Sorry to see so many of you going through this. Although, many of our situations are different, I'm here to offer support and encouragement to anyone who needs it!

johannakat

10-03-2007, 01:09 PM

welcome Mtnmom :) glad to have you among us...and hopefully your surgery helped you?

michelle C

10-28-2007, 09:05 PM

HI there!
Wow, I am glad to find this site. I have gotton to the point where I really need to talk/hear what other's have to say. I kept thinking that if I joined a chat board, I would end up obsessing or negative, but here I am and I am happy.
I am 33yrs old. I have TOS, had rib resection in Apr 06 after 2 mva's, May/Nov 2004. They took the 2 branches of scalenes on left side also. Not much into typing tonight as the whole reason I was searching was b/c I am sore from foldig half a load of laundry and utterly frustrated. I was happy to see that I am not the only one who cannot do so many things. One girl posted she cant shop or do anything with arms, that is me, everything triggers it and I am dealing with people that dont understand it.
So, here I am and thank you for a great site, I will definatly pass it on to my clients who suffer pain also as I teach pilates rehab.
MAny thanks,
Michelle---did I post in the right spot?? LOL, sorry, new at this

gibbrn

10-28-2007, 10:14 PM

Hi Michelle,

Welcome and yes you are in the right spot. When you are able try to post a new thread in the other part of the forum and we can see about docs....therapy and any other issues you have let it out we are here to help and we are here to make sure you DO let it out we are great at listening...we have no choice....we all read but may not post.....some are more functioning than others, but all know the hell of TOS!!!

Welcome to our happy family......sorry you are part of it...but we all somehow manage to continue......

love and hugs,
Victoria:hug:

Jo*mar

10-29-2007, 12:43 PM

the link to michelle's copy of this on the main TOS forum -
http://neurotalk.psychcentral.com/showthread.php?t=31048

holhar

11-06-2007, 09:46 PM

Hi. I've been lurking a while and decided to join. My son was diagnosed with venous TOS about a month ago. Since we are close to Hopkins, I talked to Dr. Freischlag's office and they got my son in immediately. He is only 10 and her youngest ever patient. Dr. Freischlag said my son needs surgery. I was just wonderinghow other people made out with first rib resection and/or Dr. Freischlag. It's been comforting to know that we are not alone out here.
Hope to hear from you soon.

ihtos

11-07-2007, 07:39 PM

I've heard good things about Dr Julie Freishlag. Good Luck to you and your son! :hug:

Dena

12-13-2007, 03:00 PM

Hello All :)

I am very new here, and to TOS as well. I am not yet diagnosed. I would like to tell my story, because I am scared and feeling very alone right now. IF you'd like to read it, I welcome comments, opinions, suggestions and your experience.

Here goes...

Years ago I was a high school cheerleader and pom-pom girl...this was 1990 so picture big bangs, frosted lipstick and jelly bracelets.

I was performing a routine to the classic tune of "Can't Touch This" by MC Hammer ;) when one of my bitchin' moves knocks my arm out of socket. That is the kind of injury that you can't help from just poppin it right back in. I kept cheering cuz we were winning, I was co-captain after all.

Fast forward to the turning of a new millenium. The whole family gets in a 45mph car accident....our Tahoe versus the 1997 Nissan Sentra. I had moderate neck and shoulder pain for 10 days after that.

Between 2000 and 2007, I had what I call "episodes" of shoulder and neck pain. Sometimes, I'd sleep wrong and my hand and/or arm would be numb upon waking. These episodes typically lasted a week to ten days, with moderate pain until I went to the Chiropractor. His adjustments helped tons. So much so, that I never went to him for his recommended follow-ups. I only took the time to go to him when the pain got bad. He consistantly suggested that I make weekly (or more) visits to correct the issue with my neck and posture.

Now comes the divorce. My husband of 12 years leaves, all kinds of bad things happen to my family; financially, emotionally and otherwise. Before the demise of my marriage I was self-employed, able to contribute to the finances of our upper middle class suburban home in various sales jobs and MLM success.

After he left, not only was I depressed, but my three children and I were completely destitute. In a matter of 6 months, we lost the house, the car, and our dignity.

After trying car sales and making no money (can anyone say recession?), just over two months ago I took a job as a waitress working third shift (9pm to 7am) at a diner style restaurant called Steak-n-Shake. That's when things went from bad to great to worse.

The "great" was that I loved the job. I loved interacting with people, helping them and being a good waitress. I took pride in my work, cleaning and stocking and waiting on people, repetitive motions on that shoulder and neck. I made pretty DAMN good money too. Not rich-type money, but a decent take home to survive. Then the numbness started.

The "worse" was that after about a week of serving glass after glass of tea, cokes, coffee, shakes, chili, burgers, etc...I started to frequently awake with the fingers in my left hand tingling painfully and "asleep". I figured I was sleeping on my bad left shoulder and tried to ignore it. Another month into it, I was taking as many hours as I could, working 10 days in a row frequently. The money was needed and earned doing something I loved, but the numbness was creeping up my left arm, and sometimes woke me in the night.

Now, for the past five days...I wake up, and my whole left arm is numb, except for the burning pain in my inside forearm. From time to time, the right hand has numb fingers as well, but never as bad as my left.

So I Google "numb fingers pain" and wind up on some forum (don't remember which) where a poster suggests TOS to an inquiring mind. I look it up, and read the smptoms, my jaw dropping. The poster was supposedly a doctor at one of those "ask a doctor" sites and he recommends that I list my symptoms to ensure a proper diagnosis. So I have. I've listed them below because I want to know if my symptoms are similar to what you all feel...and how on earth we are supposed to deal with the pain (exercise? I really hate exercising). Again, your comments are welcome.

Extreme Pain and severe numbness in L arm when laying down
Whole arm aches with activity (like typing, serving, etc)
Left shoulder frequently cracks
Left shoulder markedly lower than right one
Consistant pain localizes more intensly at the wrist, elbow, shoulders and finger joints (in that order)
Entire hand, wrist and arm ache and are numb up to the elbow. SEVERE pain in the inner forearm, makes me cry sometimes :(
Mild to moderate upper back/lower neck pain
Weakness and shaking when handling even very light items
Continual swollen feeling to the left fingers
Compensating by slouching and over using right arm/hand

What I have tried (five days into the extreme pain):

Heating Pad (helps)
Posture (don't know if it helps yet)
Muscle Rub (feels good, very short term)
sleeping sitting upright
trying to stand and sit with a better posture
800mg Ibuprofen (barely touches it)

MRI Results:

C Spine: No Nerve Impingment
Shoulder: Tendonitis (Supraspinatus Tendon)

Thanks for reading. :) Glad to meet all of you,

Dena

Dena

12-13-2007, 04:19 PM

btw, my first othopedic consult is tomorrow morning. wish me luck
:)

pianoplayer

12-28-2007, 08:45 PM

... in order for anyone to read/reply to my posts? Not too familiar with the protocol on forums, sorry if I offended by posting "out of turn".

I'm a professional pianist, injured in a car accident three years ago. Had ulnar nerve transposition and arthroscopic shoulder surgery two years ago. The shoulder pain never went away. Elbow pain has returned worse than before.

My doc now thinks I have TOS, and from what I've read it seems like a good diagnosis.

So, my question - if you have nerve entrapment in more than one place, can you need to get the nerve decompressed in both places at once? Should you?

thanks

thursday

02-13-2008, 04:18 PM

So I want to re-introduce myself. Hello! I'm threading the waters of TOS/ RSI and the workers' comp system in California. I really love this forum. Its a wonderful resource. I am trying to expand the resources in the cyberworld (:p), I have started a blog addressing questions I've encountered along the way. If anyone is interested, please check it out!! :D http://rsi-wc-california.blogspot.com/

Thanks guys! :grouphug:

emtnlover

02-13-2008, 11:09 PM

I was diagnosed 12/06. Had 1st rib resection on right in 06/07 and on left 12/07. Don't know where I got this blessed thing-mva 12/03, rounded shoulders, fell out of tree 4/06. Have done lots of PT and exercises at home. Ice is the best besides the pain meds which I have weaned off so as not to get addicted (addiction in family). Seeing Dr. Ahn in LA and hopefully another block next Tuesday will reveal why the pain in my left is getting worse again!

I am very impressed with all of the things some of you have gone through and still have a positive attitude!! Gives me a reason to quit whining!!!:wink:

Indea88

02-22-2008, 11:11 AM

Hi everyone- I can't believe I just found this site after all this time. I'm suffering in the middle of a flair..
B/L TOS/Brachial and Cervical Plexopathy since 1994.RSD, Fibromyalgia.
From MVA in 1994, was , hit on passengers side while I was the driver and suffered a torsion (burner injury). I get into trouble with things I know I can't be doing..lifting a 40 lb 4 year old, vacuuming, etc.
Iv'e been suffering with exhausting pain...I have a great PT who has helped me tremendously....My family has no understanding of this disorder.So glad to have found this site!!! Thanks:)

Noxy

02-25-2008, 02:08 PM

Good day all.I have right sided TOS and had surgery for it in Dec 2007.All went not to bad.Rt.lung was not fully functional after surgery.Had to do the breathing exercises for couple of weeks. Came back thank goodness.
Work tried to force me back before I was seen by my surgeon for follow up.I waited for my surgeon and lets say.....the return to work has been worse than being freshly post op! Surgeon wanted result of a certain exam before seeing me for follow up but work said did not matter and took my pay from me for 3 weeks! Doc note said to remian off work but they say they do not accept doctors notes!!The fight goes on about that.
As for post op...was very painful for about 3 weeks.Just to lift my arm made me feel sick .Just got some of my range of motion back.Arm still weak to the point I cannot lift much. I am an xray tech/mammographer so all my hours are filled with lots of lifting.My neck feels very tight on rt side.incision under arm healed nicely...still numb though and sore at some points.Hand still goes blue when used. NO one at my work even knows what TOS is let alone what a rib resection involves ,so kind of get feeling they think I am lying.
Hope you all are doing fine.I hear you and feel your pain!

Chef Dawn

02-29-2008, 10:30 PM

When BT went down I was devastated! Finally life has settled down enough to find you all! Was sad to see the above "in memory". I remember her well!

We have moved back from Vermont to Colorado, And am beginning new life.

Love you all, Dawn

tfall

03-13-2008, 04:49 AM

I have been a member for a few months. But decided I'd better intoduce myself. My name is Terri , I'm from a suburb of Dallas, TX. Dr. Urschel is my doctor and by the way the only doctor in TX. I'm having surgery on March 25th. They are doing a rib resection on the right side. And then in 8 weeks we will be doing the left side.

I look forword to getting to know everyone by joining in on some of the other discussions.

It's nice to have others that understand my pain. :Wave-Hello:

Suziq0805

06-19-2008, 01:16 AM

I am a 24 year old band teacher diagnosed with TOS back in February. My symptoms began as right wrist pain about 4 years ago and since then have spread to many more. I have been to several docs and am in my 2nd round of PT right now. I am scheduled for surgery in less than 2 weeks now with Dr. Sanders. He's currently planning on doing a bilateral pec minor release. Recently after stretching my pec muscles I get this burning sensation around my collarbone....like a sunburn feeling. Is that common with TOS/pec minor syndrome or do I need to begin investigating RSD?

mtski15

08-19-2008, 11:40 AM

Hello out there,
I was born with a cervicle rib and for years I have had problems--tendonitis, carpal tunnel, de quervain, oa. Now doctor's are looking at fybro. Not working at the moment 2 years. Need to know where to go from here. I'm kind of thinking I should be looking at SSI. Does this make sense? I've been to chiorpractors, orthopedic(sp), rhumatoid dr's, and general practioner, nathural path also, for each new thing that pops up or really bothers. Any ideas?

Jo*mar

08-20-2008, 02:30 AM

Please feel free to also post in our main TOS forum here -
http://neurotalk.psychcentral.com/forum24.html

Especially if you have questions, sometimes we miss noticing the intros here.
sorry about that. :grouphug:

jeannie quiroz

09-29-2008, 04:42 PM

After being diagnosed 15 yrs ago w/TOS my pain mgt. Dr. gave up because my employer (AT&T) would deny her treatment recommendations. After yrs of going from Dr. to Dr., meds, PT, etc. I found a neurosurgeon in Santa Monica who has developed MRI Neurography which he used to finally be able to tell where and how my nerves were being compressed. He did surgery in my thoracic area, minimally invasive. He also did surgery in my buttock area because my sciatic nerve was being compressed by the periformis muscle. He was a God send. I am 5 wks post op. I feel that I am on my way to full recovery. I feel I have gotten my life back. :)

InterHat

10-07-2008, 04:40 PM

Hi I'm Galen,
I'm new here so I thought I should introduce myself. I'm 24 and male which seems a bit out of the ordinary for TOS. As a result, I can't get any sort of real diagnosis for my problem. Oddly enough, I was in really good shape when this all began about a year ago. I've gone from my primary care physician to neurologist to an orthopedist to PT to recently being told to go to a rheumatologist.

My problems started with poor posture at work/slouching. I started developing numbness in my pinky and ring fingers due to ulnar nerve compression from resting my elbows on the desk. As soon as I FIXED my desk ergonomics all hell broke loose. Long story short, my scalene muscles are now like iron and when I wake up in the morning if feels like I just did a back workout at the gym the day before. My biggest symptom is that my fingertips now have decreased blood flow. They get really wrinkly in water and cold. I have to be careful with what physical activity I do.

Hopefully I'm able to get some relief along with everyone else on here. Cheers! :Wave-Hello:

Sheri_TOS

10-10-2008, 02:05 AM

Hi! I was on the other forums a few years ago as I developed TOS on the right side due to a car accident. I eventually had surgery and my 1st rib turned out to be abnormal. All nervous and vascular symptoms disappeared (or greatly diminished) since surgery; however, I'm back on the forums as I've likely sustained an injury to my left brachial plexus in a fall 3 months ago. Besides neurologic symptoms, I am now experiencing vascular compromise problems. Due to the swelling, the doctors are finally ordering imaging of the shoulder and brachial plexus.

A bit about myself: I live in Washington and have a 2-year-old son. He's a good kid!

JennyH

11-30-2008, 04:59 PM

Hi
After visiting the forum for a while, thought I should actually finally join.

I'm based in the UK and started getting symptoms at Easter. Fairly rapidly progressed and by June my left hand was clawed, no grip, severe pain and no pulse - and couldn't turn my head to the right without getting dizzy. After 2 months of not getting anywhere with the joys of NHS - public health care in UK - no picking who you go and see - I finally had an angiogram which showed that when I raised my arm or turned my head, I occluded my subclavian artery.

Had my first rib resection just over three months ago and the first few weeks were tough - finding the forum and reading other people's experiences really helped me realise I wasn't the only person who found it hard...and now I'm improving all the time. Long way to go but I'm back working 3/4 time, swimming and starting to get back to normal.

This is a great resource - and such a supportive community. Thank you.

o2bponca

12-01-2008, 02:29 AM

I am so glad I found this forum. I don't know anybody (except for my vascular surgeon) who has ever even heard of TOS. Like many of you, it has taken several months to get to this diagnosis.

Had a whiplash injury from the right rear that snapped my head to the front left. Hadn't associated it with the pain, weakness, and numbness I started to have in my left arm, shoulder, and neck until surgeon discussed the possible causes of TOS with me. Ding! - Lightbulb!

Also, I'm a transcriptionist and make a living at my computer - so I'm sure that doesn't help.

My S/S are: left arm heaviness, aching, and numbness/tingling (especially of last 3 fingers); frequent headaches; NO pulse or blood pressure with arm abducted or head turned; constant pain at front and back supraclavicular area and left side of neck; even more pain when I try to lift anything or use my arm in an unnatural or "tweaked" position (even pushing myself up out of a chair is painful now); white to bluish discoloration and swelling of arm/hand; veins showing up all up and down left arm, but not right.

Have also had some other symptoms recently that may or may not be related: left ankle pain and swelling; transient hypertension and tachycardia ; bilateral supraclavicular swelling; similar TOS symptoms starting on the right side.

X-ray, MRI, and CT show nothing except loss of lordotic curvature (of neck), but docs can't deny the loss of pulse with arm abduction and so were willing to continue testing. Angiogram on Nov. 19th showed complete subclavian arterial and venous occlusion with nerve impingement between clavicle and first rib with arm abduction. Doc recommended first rib resection, but is referring me to a doc with more experience.

I'm scared and nervous to have this surgery because I'm a very busy wife, mother (x5), and small business owner (x2). Everything I've read so far says the post-op for this surgery is horrendous and long and that the surgery itself is not always successful. I'd love to find an alternative but doc says vascular complications make surgery necessary and opting out could be life-threatening.

Thank you so much for all of the support you have shown in the short time I've been on this forum. I'll continue to search threads looking for info. Would love to hear from anybody with similar S/S, diagnosis, prognosis, etc. Also, if anybody knows of an in-person support group in Southern California (Riverside or San Diego counties specifically), I'd love to get information on that.

Thanks again!

Carrie

rbn4jsus

02-21-2009, 04:31 PM

Hello,
Reading several posts on this forum has been helpful and concerning. I am a 40 yo generally healthy woman with bilateral cervical ribs. Symptoms in my neck began 20 years ago, chronically 5 years ago after a car accident.

I've done everything in the book to manage the discomfort. Both my kids have c-ribs too. They've each had one rib recestion due to arm pain with excellent results. My main symptom is neck muscles locking up randomly-spasms, upper back, some slight arm discomfort. TOS study showed vascular impingement. I consulted surgeon who did my kids' resections last week-he thinks he can help me. i am unsure. I am not a teenager to heal as quick as they did, and my symptoms are not the same as theirs. Doc thinks he ccan help-after reading here today...yikes.
I'll be checking back for any new updates. glad to know I'm not the only one:)

*I'll copy this to the main TOS forum also*Jo

tied

02-23-2009, 09:38 PM

52 yr old female. i was diagnosed w/ tos 2 yrs following bilateral mild carpal tunnel. i have been in 3 major car wrecks and had 4 major falls. doctors disagree on diagnosis. i was scheduled for right rib resection w/ sympathectomy w/ dr urschell and i got other opinions that i don't have tos or it is quite a minor case. i had no warm fuzzy feeling and cancelled. i manage quite well with no surgery. now i also have a healing break in left humerus and a labrum partially torn. the left side feels much better than the right. i have had 3 whiplashes, 2 rib contusions, a rotated pelvis, cartilege damage in right thumb, left elbow broken, left pinky broken, and the left humorus was actually broken twice. also hysterectomy (total) and mild osteopenia. i also have sprained the right ankle about a dozen times and broken it once.

Mikeyson3

04-13-2009, 10:56 AM

Hi all, my name is Michael and im 20 and was diagnosed with bilateral TOS at age 18 from a lifting injury/aggravations.. i just tried to post a new thread on my recovery, but ill repost it here incase it doesn't go through.. hope some of this info helps yall, it has helped me a TON..

Hi all, just want to share some things that helped me after being diagnosed with TOS -- whether i REALLY had or not, im not 100% but several therapists/orthos claimed it as well as an ultrasound confirming certain arteries losing blood flow when i raised my arms).. i also was misdiagnosed with having bilateral cubital tunnel syndrome and even got an ulnar nerve transposition in my left arm, which did little to help..

i went to PT for 2 years, had 1 surgery, masage therapy, as well as some other treatments which all helped to an extent, but ill share what REALLY has helped..

one other thing, i was lifting a ton before i really became unable to do things because of severe pain/numbness/weakness in pretty much all upper extremities, especially on the left.. however, as I stopped lifting (having to) and i got in worse and worse shape, my condition worsened contrary to what many as well as myself would believe.. i believe this is because of postural reasons(???) as most PT/recovery treatments influence strengthening to keep the postures/nerves/etc supported

anyway, i was introduced to something called Active Release Techniques (active release dot com) (aka ART) from a friend who receives it weekly (he is a D-1 athlete) for various injuries.. i really wasnt too optimistic of it working as nothing as, but this chiropractor who is certified in ART did more for me in TEN MINUTES (i swear to God, 10minutes) than 2 years of PT/Massage/surgery/etc.

what he did was relax (i guess is the word?) my scalenes with his hand(above the collar bone), altered my head/neck in several set directions each time, then glided the median/ulnar/radial nerves through with 3 different movements(they wouldnt glide without him relaxing the scalenes) and then did a number of "techniques" on my SCM/neck/subscap/forearm/wrist/and some other upper extremities which seems to keep the nerves freed up everywhere they pass through and eliminates scar tissue which can pinch/trap them.. i visited back every other day (or maybe every 2 others, i forget) for about 7-8 days, each time feeling significantly better and the nerves gliding with less and less of him altering soft-tissue/muscles.. i now go back every other week for this injury among others..

anyway along with ART, i learned several other things to do/not do to alleviate pain/nerve irritation..

-IF you get ART like i did/am, STOP doing those PT nerve stretches that invlove HOLDING the stretch for a number of seconds.. just simply emulate the 3 stretches the ART chiropractor/trainer/etc uses (they are pretty similar to the PT ones) but do NOT hold them-maybe for a second or 3, just do the movements.. i realized holding them for 10+seconds or so provided instant relief, but long-term irritation.. just doing them for 1-3 secs provided the same relief without really overdoing and damaging the nerve.. however ART did NOT completely fix my problem but these things have helped a TON along with it..

-muscle stretching.. you guys know all these.. dont overdo them though.. scalenes/scm/deltoids/tris/traps/forearms/lats/lat-tri attachment/subscap,chest etc.. stretching is very important, especially before/after strengthening

-next.. STRENGTHENING is KEY.. i went to john hopkins and they told me NOT to strengthen, their top vascular surgeon told me this.. she claimed my build was too small in comparison to my scalenese or something and that i should never ever do chest(bench press,etc) again.. this couldnt be more off.. every single time i work out, i feel ultimately more improved over the next couple of days after soreness subsides.. you def want to start out slow (and dont start to strengthen till a few weeks after your initial ART appointments so the nerves can heal a bit/reduce irritation).. strengthening of chest/delts/upper and lower back/tris have helped so much.. your posture is so much better when you sit in a chair or sleep or anything, i no longer get that instant muscle tightness/pain and nerve irritation when in certain postures like i did before (as well as the 24/7 shoulder/hand/arm/even facial pain i had before ART/strengthening/etc)

i really dont know why all these docs say not to strengthen, like i said the vascular at hopkins as well as DR. Richard Sanders (who i saw mentioned on here, who i talked to on the phone) were completely against any strengtherning - though PT DID influence it

-sleeping.. never ever sleep on your stomach, you all probably know this already.. i also got into a habit before i improved of using a neck pillow or no pillow because it was less painful.. again if you choose my route and get ART/strengthen/etc.. continue to sleep on your back, but with a neutral pillow as a neckpillow/no pillow tightened my SCM/neck very bad.. you also dont want to use too high of a pillow.. your neck should be neutral.. i recently started to sleep on my side sometimes again for the first time in like 2 years and i find it helpful to hug a pillow, it also will prevent (or it does for me) rolling onto your stomach

again, im not 100%, but i am 90000000x better than i was just a few months ago from everything i have posted.. i no longer have numbness/weakness/tingling, no constant pain in shoulders/upper extremities.. my traps are no longer completely knotted/tighted up.. my face/ears no longer feel beyond tight/knotted up.. headaches/lack of sleep/increased symptoms at night - significantly reduced.. chest feels loose, everything is just night and day

Im not trying to advertise ART, I just felt so hopeless/depressed and i know what some of you are going through.. many i am 100% sure have it 10x worse than I did but really if you are desperate, take my advice..

my email is ** if ya's have any questions.. if you want you can post this on another message board... just trying to help :)

thanks

nurseinpain

05-06-2009, 09:11 PM

o2bponca

05-12-2009, 11:51 AM

Hi. I am new to the site,. I have had two surgeries for arterial tos. I am now in severe pain w/ loss of sensation and grip. I have to sleep w/ arm on pillow. Is anyone else having this problem?:confused:

Did you have surgery on both sides or on one side twice? Did you have any neurogenic problems before (like the loss of sensation and grip) surgery? How long ago was your surgery/surgeries?

I just had my rib resection/scalenectomy 10 days ago and now have numbness on the back of my upper arm (like it's been sitting on ice for an hour) that wasn't there before. Doc says its from stretching the nerve during incision and getting access to ribs at surgery. Should get better within a month or two.

It's a trade-off because the alternative without surgery was no blood flow and risk of clots, etc. Thankfully, that seems to be restored!

Would love to compare notes with you.

Carrie

epidEmic

05-22-2009, 10:24 PM

Hello all,
My wife has been browsing your forums for quite some time now and i decided its time for intros.

32 yr old male
injured in Sept of 2008 on the job
on W/C
Dx'ed with TOS in left shoulder

We live in AK, so there are very few doctors whom will deal with my diagnosis. I was very lucky to have found my current doctor. I have been doing Phys. Ther. since Sept. 2008. I feel the treatment plan has floundered. There is only one Dr in AK whom will operate. I am at the end of my rope ( :icon_frown: ) and it seems from the reading i have been doing that i can expect to wait quite abit longer. Once again i can't say enuff of how much it has helped knowing i am not crazy and that i am not the only one in the world with this problem.

o2bponca

05-23-2009, 12:52 PM

I see that your post here is a few months old, but thought I'd comment anyway about your concerns of recovery from rib resection surgery - just in case you're still battling with the idea. I was REALLY nervous about this too while facing surgery with a small business, side job, five kids, and a household to run. I actually planned for a few months of recovery, flew my mother down from Washington to help out, and basically "signed out" of life for a few months.

My surgery was on May 1st. First week was hell and jam-packed with pain medication. Second week was 100% better but still recovering and having a lot of pain. Third week I started feeling human again and even wanted to drive, type, and work a little. Now I'm trying to hold myself down to not overdo it, but I can't believe how quickly I'm recovering. Hoping the nagging (but relatively minor) pains, etc. won't last forever, but overall I'm very pleased. The venous and arterial blood flow is restored, so my surgery was a success as far as I'm concerned.

I know that every person's situation, diagnosis, prognosis, and recovery process is completely different, but hopefully my input will help you out. Good luck with whatever you decide. Hang in there!

Hello,
Reading several posts on this forum has been helpful and concerning. I am a 40 yo generally healthy woman with bilateral cervical ribs. Symptoms in my neck began 20 years ago, chronically 5 years ago after a car accident.

I've done everything in the book to manage the discomfort. Both my kids have c-ribs too. They've each had one rib recestion due to arm pain with excellent results. My main symptom is neck muscles locking up randomly-spasms, upper back, some slight arm discomfort. TOS study showed vascular impingement. I consulted surgeon who did my kids' resections last week-he thinks he can help me. i am unsure. I am not a teenager to heal as quick as they did, and my symptoms are not the same as theirs. Doc thinks he ccan help-after reading here today...yikes.
I'll be checking back for any new updates. glad to know I'm not the only one:)

*I'll copy this to the main TOS forum also*Jo

mklexa

07-17-2009, 04:48 PM

I've had symptoms since I was 18. Misdiagnosed for the first 3-4 years, I had 2 needless surgeries before my 1st rib resection in '02. Still struggling daily though. . .

cassi19661

08-08-2009, 04:44 AM

I am new here, but not new to tos. please excuse typing, i am in a wrist spllint.
I started with severe neck arm pain, was told I need neurosurgery. :eek: cervical stenosis, c-spine spomdylosis, ddd, diagnosed with tos by 5th neurosurgeon, 2 level fusion of c5-6 and c6- in july 07, it helped a lot becuz then i could not move at all for 7 months. it has slowly returned in this past year to the point that i am in trouble cuz there's no way i can work and i need to get divorce.....i also have bad low back probems constnt pain there, hips and legs, upper back.

kfarneti

09-21-2009, 04:27 AM

Hi to everyone,
I'm F/47, dx tos late jan 09, had rib removed May 7th.
otobponca, I'm so glad to hear your postive results from your surgery!:)
Mine have not been so successful. I was in the hospital for 5 days went home, noticed my incicsion was not looking happy, went back to doc only to be put back in hospital for another 4 day to get rid of the infection! I still have much swelling, pain and numbness all the way down my arm and my fingers. I still have "pins and needles" and stingers. Now since the surgery, I've a deep cough (which we all know the painful results of those:( ) and the feeling of an ice pick(or a hot iron) shoved through my chest and out my shoulder blade! My pm says it's just the nerves settling down and it may take a while 6 mo to a year!The surgeon I had, stopped seeing me at the end of May. I told him of my issues and was told that I must be crazy, cuz non of his other patients had those problems:eek:
I have nothing left to say to him. I also now have no insurance, no medical or ssi allowed b/c I have a retirement fund, no sdi, no w/c and waiting for an answer from ssdi. I hear it could take years! they'll have to look for me living under a bridge or something by that time:mad:
Thanks for listening, I don't know what else to do. PT is too expensive, thinking about maybe finding a good chiro or pt or doc to date, know of any single:winky:
Kathy

ps: is there another thread for TOS or is this the one?
thanks

Koala77

09-21-2009, 04:34 AM

...ps: is there another thread for TOS or is this the one? thanks

You found the thread where our new members in the TOS thread introduce themselves.

Most people move down below here to post their questions.
Here's the link and you'll find "New Thread" towards the mid top, on the left... where you can open a new thread to discuss your concerns.
http://neurotalk.psychcentral.com/forum24.html

Jo*mar

09-21-2009, 12:50 PM

kfarneti
I'll copy your post and make it a new thread on the main TOS forum for you.

Gunner1960

10-26-2009, 01:45 PM

Injured in a fall in 1986 - finally diagnosed with Right side TOS in 1988, went bilateral in early 1989.

Had rib resection in 1988(June I think) worked for about 3 months....went back to even more severe and bilateral at that time.

Retired for medical in July 1990.

Treated by VA ever since.

Been an interesting road.

"You have TOS."
"You don't have TOS."
"You might have TOS."
"You may have had TOS."

Anyway...to sum it up...a LOT of tests later and over 20 years....

I have:

TOS(Bilateral Neuro/Vascular)
Fibro
Arthritis(L5-S1)

Constant pain body wide and no options left. The VA was talking surgery on elbow/wrist such as is done for Carpal Tunnel and Tennis Elbow....not interested.

Now for a question.

Has anyone had Nerve Root injections(I think thats what it's called)?
I am going for eval in early Dec and am trying to get an idea of the effectiveness of it before committing to anything. I also go tomorrow for eval for TENS unit and will actually get trained this time. Used one before but quit working after I left the hospital, probably because I didn't have a trained medical person to apply the leads where they would actually work.

Wife is now a Licensed Massage Practitioner in Washington State and will be able to help...just don't have a unit to use.

If anyone on here has any info on the injections and effectiveness I would greatly appreciate it.

Thanks