Go Back   NeuroTalk Support Groups > Health Conditions M - Z > Thoracic Outlet Syndrome

Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

TOS from a patient and a surgeons point of view

Reply
Thread Tools Display Modes
Unread 11-18-2012, 08:12 AM   #21
mspennyloafer
Senior Member
 
mspennyloafer's Avatar
 
Join Date: Oct 2010
Location: ga
Posts: 1,459
Default

is p minor more likely to affect a nerve distribution than say scalenes?

my median nerve distribution is more numb than my ulnar and i dont have cts

seems dangerous to get surgery without having ANY diagnostic tests. i guess im going to have to go back to stretching my armpits out. they feel raw.
__________________
last felt my fingertips august 2010
.
mspennyloafer is offline   Reply With Quote
Unread 11-19-2012, 01:19 PM   #22
romans8
Junior Member
 
Join Date: Aug 2012
Posts: 82
Default

Quote:
Originally Posted by shengggmd View Post
Short answer is no. Arterial TOS patient 99% time present with pulsatile mass in supraclavicular area related to the aneurysmal degeneration of subclavian artery. Aneurysms in this are can do two things 1. throw clots down to the finger tips. 2 thrombose and completely occlude and cause limb loss. 1% patient can present with vertebral artery stroke because vert. a comes off subclavian artery when subclavian artery thrombosis clots can got to brain. I have seen it once. Venous TOS in additional to arm swelling can cause pulmonary embolism ( i think of the hansons brothers (the band) had VTOS with PE) . should not give you pulsatile tinnitus.
I developed a large pulmonary embolism 10 days after rib resection and scalene removal. They searched everywhere but could not find where it originated. I am wondering if what you have stated in the above quote offers any clue.
romans8 is offline   Reply With Quote
Unread 11-19-2012, 05:32 PM   #23
Joshuamr
Junior Member
 
Join Date: Oct 2012
Location: New york
Posts: 39
Default

I'm confused.I went to a vascular surgeon today and they performed a ultrasound test which revealed no venous or arterial TOS. He said its possible that I have NTOS, but unlikely. He said that if the space of the thoracic outlet was large enough to not cause venous or arterial TOS it was unlikely that I had neurological compression. I was under the impression that NTOS was the most common syndrome presenting alone without venous or arterial. if thats the case, his statement would then be wrong? One of my symptoms is, upon elevation of my arm my fingers "lock up" and I am unable to open them until I lower my arm. He said he had never seen TOS present this way, and dismissed it as some other neurological disorder. He said I would have to see a neurologist to make those calls though. So I guess I'm left in further confusion yet again. Has anyone had a negative ultrasound with a positive NTOS diagnosis? And did everyone have to go to a vascular and neurologist separately to rule out the different types of TOS? Any input would be appreciated. Thanks.
Joshuamr is offline   Reply With Quote
Unread 11-19-2012, 10:01 PM   #24
Jo*mar
Co-Administrator
Community Support Team
 
Jo*mar's Avatar
 
Join Date: Aug 2006
Location: Pacific NW USA
Posts: 20,229
My Mood:
Default

Quote:
Originally Posted by Joshuamr View Post
I'm confused.I went to a vascular surgeon today and they performed a ultrasound test which revealed no venous or arterial TOS. He said its possible that I have NTOS, but unlikely. He said that if the space of the thoracic outlet was large enough to not cause venous or arterial TOS it was unlikely that I had neurological compression. I was under the impression that NTOS was the most common syndrome presenting alone without venous or arterial. if thats the case, his statement would then be wrong? One of my symptoms is, upon elevation of my arm my fingers "lock up" and I am unable to open them until I lower my arm. He said he had never seen TOS present this way, and dismissed it as some other neurological disorder. He said I would have to see a neurologist to make those calls though. So I guess I'm left in further confusion yet again. Has anyone had a negative ultrasound with a positive NTOS diagnosis? And did everyone have to go to a vascular and neurologist separately to rule out the different types of TOS? Any input would be appreciated. Thanks.
Have you had EMG, x rays & MRIs, of all possible areas of concern, to rule out other possible factors?

Expert Physical therapy? Chiropractic?
Maybe a possible entrapped nerve that can be manually relseased?
My chiro adjusted my wrist, elbows, top rib, knee, foot, shoulder.. whenever I had a specific problem and needed those addressed.
__________________

.
Check the Helpful sticky threads near the top of every forum.
site FAQ's
.

Use the search tool to find information posted in other NT threads & posts
Search link -
.

NT Guidelines
.



.


.
Jo*mar is offline   Reply With Quote
Unread 11-19-2012, 10:56 PM   #25
Joshuamr
Junior Member
 
Join Date: Oct 2012
Location: New york
Posts: 39
Default

Quote:
Originally Posted by Jo*mar View Post
Have you had EMG, x rays & MRIs, of all possible areas of concern, to rule out other possible factors?

Expert Physical therapy? Chiropractic?
Maybe a possible entrapped nerve that can be manually relseased?
My chiro adjusted my wrist, elbows, top rib, knee, foot, shoulder.. whenever I had a specific problem and needed those addressed.
Hey jo*mar, yes I had an Emg with irregular diagnosis (slight ulnar nerve entrapment and a slight slowing of the radial motor nerve on the effected side), but my neurologist said it didn't explain my symptoms. I had an mri of the neck with herniation and a bulging disc, but again the Neuro said it didn't appear to be pressing on the nerves. I had a mri of my shoulder to rule out rotator cuff tear. I had an mri of my brachial plexus in a normal laying down hands at side position, with negative results. I had 4 months of physical therapy, where the therapist was working on trying to adjust my rib on my effected side, which he said felt elevated. Left there in more pain most days. All of my symptoms are aggravated by the use/overuse of my effected side arm. Arm, hand, and shoulder weakness. Burning numbness in the scapula. And of course the inability to move my fingers when I elevate my arm.( excluding the little finger,which I can still move, hurray!). My Neuro mentioned NTOS and told me to see a specialist. Strike one with that today. Guess I'm just waiting for some kind of diagnosis so I know the best plan of attack,because right now I feel hopeless. I can control the pain sometimes, but never escape it. It's just extremely frustrating going from one doctor to the next hoping for an answer but instead getting another referral. I am trying acupuncture now which seems to relax me, but does nothing really to alleviate the pain. Sorry for the rant, sure I repeat myself in posts, but it helps to vent when you feel lost. Thanks for listening.
Joshuamr is offline   Reply With Quote
Unread 11-20-2012, 02:05 AM   #26
Haute Mess
Junior Member
 
Join Date: Oct 2012
Location: GTMO
Posts: 56
Default

Quote:
Originally Posted by Joshuamr View Post
One of my symptoms is, upon elevation of my arm my fingers "lock up" and I am unable to open them until I lower my arm. He said he had never seen TOS present this way, and dismissed it as some other neurological disorder.
My left finger - same side as my cervical rib - locks when I play my cello. It's very frustrating. Ortho/neuro/vascular don't seem particularly concerned. Also frustrating.
Haute Mess is offline   Reply With Quote
Unread 11-20-2012, 07:21 AM   #27
NerPain4
Junior Member
 
Join Date: Mar 2010
Location: Pacific NW
Posts: 37
My Mood:
Default

Quote:
Originally Posted by finz View Post
Hello NP4,

I am one of the TOS/RSD/fibro combos. There are quite a few of us, as JoMar mentioned.

I have neuro TOS. I spent several years being pooh-poohed, being told it was all in my head, with the only treatment offered being PT with weightlifting that made everything so much worse. Years of spending 12 to 16 hours a day with ice on the area trying to numb it to get some relief.

About 4 years into my struggle, after finding this forum and suspecting my issue was TOS, I founf a vasc surgeon who made the dx and sent me to a neurologist to start me off with appropriate conservative treatment, including PT with myofascial release. That made a critical difference in my L arm symptoms and with my arm and neck range of motion. No surgery needed....woo hoo ! Now I can do gentle stretching to keep my ROM. As long as I don't overdo things (and even routine housework or grocery shopping is overdoing things), my L arm is okay. Unfortunately, I was left with what feels like a burning golfball just to the left of T1, RSD, and fibro.
Hi Finz,
I'm glad you did not have surgery for neuro TOS. I did not have that singular variety of TOS unfortunately as my blood vessels were being pinched or rather, quite vehemently squashed, by the rather large first rib and bands of fibrosis and other areas of impingement.

I had every diagnostic exam/test available to rule out or rule in TOS. I also saw and got treated by and am still being seen by a neurologist and saw 4 Physical therapists. My hatchet knife pain that was 10/10 above my scapula was not going away, because it was pain from a pinched/squashed nerve. Every diagnostic test was confirmatory for TOS in my situation, it was not a mystery that took a long time to diagnose in my situation, it was very obvious in my situation. I did not have mild TOS disease. If I had the means to have had the surgery earlier, I believe my outcome would have been better. I had to go for too long with damage and fat displacement around the brachial plexus nerves in numerous places. Fat around nerves is protective as you may know.

I don't like posting in forums because I don't like having my personal health history or decisions questioned or attacked or criticized. Everyone is unique and hopefully they make the best decision that is best for them! :-)

I made the right decision for my body. That is the best that each of us can do. It is only the evil insurance people who criticize because they are the penny pinchers who are paid to do that.
NerPain4 is offline   Reply With Quote
Unread 12-08-2012, 05:56 PM   #28
starfish43
Junior Member
 
Join Date: Jun 2012
Posts: 25
Default Physical therapy?

I have heard physical therapy doesn't help venous TOS, though it might help with the neurogenic symptoms. Is this true? One surgeon told me it's all one disease anyway, but yet people keep saying there are different compression sites and therefore treatments must be different. I took physical therapy briefly for my TOS, but mine is venous. Couldn't tell if it was helping. I did seem to get a lot of muscle spasms while in physical therapy and now I don't have those spasms so I don't know if I want to go back to physical therapy.

Quote:
Originally Posted by shengggmd View Post
I have neurogenic type of tos and has been living with it since early 20s. I first felt the pain and the subsequent numbness and tingling in my left arm after a minor car accident. I thought at first it was just minor bruising and soreness related to the accident. As time went on these symptoms only worsened. I was seen over the period of few months by neurologist, orth, and neurosurgeons. All tests including MRI and EMGs were negative. I was told that all these may be in my head.

With much frustration and anger. I researched extensively on the topic. I think the most important thing for me is to resist the use of narcotics for pain control. Physical therapy and relaxation therapy helped me greatly, I also took on yoga for a few years that helped me to maintain good posture and strengthen my shoulder girdle. I am currently doing very well with minimal symptoms. only time I get some level of symptoms is when I spent all day in the operating room. As a vascular surgeon that treats TOS. I believe the field is full of controversies and may be even fraud, even amongst vascular surgeons.

I believe that the best way to approach treatment is through a multispecialized approach. As a surgeon I make money doing TOS surgery ( which everyone has to keep that in mind, that there is secondary gains there for the surgeons) but as a patient that is essentially cured by physical therapy I believe that physical therapy is perhaps the most important part of the equation. I would be very happy to answer any questions you all may have. hopefully, i can provide you all with some level of comfort and reassurance.
starfish43 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Psychotherapy from the psychiatrist's point of view (Topix) NewsBot Health News Headlines 0 07-20-2011 08:50 PM
Well: Seeing Epilepsy From the Patient's Point of View (Topix) NewsBot Health News Headlines 0 06-23-2011 03:40 PM
Gym gift.(A woman's point of view). oldsteve On the Lighter Side 1 09-25-2008 01:03 AM
ive had some kind of 'view point' break through! sunnyday Multiple Sclerosis 6 08-06-2008 12:36 PM
Full Point of View DocJohn Health News Headlines 0 08-11-2007 07:00 PM


All times are GMT -5. The time now is 12:26 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy
NeuroTalk Archives