I have been struggling for a concrete diagnosis of having TOS or not. To date I have had primarily bilateral nerve symptoms including numbness and neuropathy. I don't have any loss of strength or pain of significance which seems to be a hallmark symptom common with the syndrome. Occasional burning in the forearms but that is very infrequent.

I have seen specialist after specialist with one or two suspecting TOS but others suggesting I don't have it. The diagnostic tests are usually negative and I can do the Roos test with no real symptoms of any kind. Adsons and other tests showed little change in pulse.

I have had a c-spine MRI which was normal and NCV and EMG which were relatively benign and revealed nothing. Lately my neuropathy is spreading where even small movements of my arm are causing electric sensations throughout - not overhead or outstretched. I am going to go back to a neurologist for more testing as this seems atypical.

Very scared and tearful, panicked beyond words.

I think one of the problems is they don't want to dx a case that does not show as moderate to high pain, or has the come and go symptoms..

Much safer and less trouble for drs to only dx the fairly obvious cases with continuous symptoms & moderately high pain levels.

sometimes getting an actual dx might not be a good thing.

I am just worried it's something else and the crawling and electric like sensations in both arms seem unlike tos. They seem more like a disc issue? But my MRI was normal ...

Have you also had full blood work up?
Thyroid imbalances can sometimes play a part in symptoms.

Have you seen the TOS testing thread ?
It gives a good overview of many of the tests that can be used if needed.
http://neurotalk.psychcentral.com/post580952-11.html

I had quite a bit of buzzing and weird feelings inside my forearm muscles for a few months.


Are symptoms only in your arms , or do you have some neck tightness/stiffness along with the arm sensations?
Any fine/detail finger coordination losses?

Nerve compression can occur anywhere along the path of the muscle where the brachial plexus is covered by muscle. In addition, the myelin sheath may become "sticky" due to irritation. This website explains it better than I can:
http://intraspec.ca/PIIS0749071203000908.pdf

Surgery or injections of any kind should always be considered an act of desperation. First try trigger point therapy of the scalenes (3 on each side) and both pectoralis minor. There's a lot of stuff in the axilla (the brachial plexus, lymph nodes, blood vessels), so any work in this area must be careful. But the corachobrachialis can entrap the nerves deep in the armpit.
But do try the nerve gliding stretches which can release adhesions within the nerve sheath which will make movement of the nerve easier.

Have seen the testing thread and googled every possible article on TOS. In some ways I know more about it than a lot of the doctors I visit. :-( they did the blood panel first when all of this first started.

Haven't lost any strength or precision in fine movements yet. Hoping that is not in the cards. Worried about permanent nerve damage but unsure what to really pursue next. So exhausted. I have seen numerous doctors. 3 neurologists. PT for 20 sessions. Ortho. Chiro. Just beyond scared and frustrated.

I'm only 33 and am realizing that my life is likely forever altered or diminished because of this. Newly married and I am having a difficult time wrapping my brain around the fact I am headed for a lifetime of pain or multiple surgeries for recurrent symptoms. Not sure how I will work or maintain any sort of independence.

Seems the realistic outcome of surgery is less than 30% - don't really like those odds. I'm so desperate for any sort of help.

Hi 343v343,
I'm a newbie to NeuroTalk and have not yet had any replies/info from my posts... I'm not quite sure if I'm posting correctly????
OMG I truely feel 4 u!!!!!
I've been there. All I can say is that you know if you're not feeling right so persist in getting yourself checked out.
Its so frustrating and worrying when doctors don't know what is going on with you!
It took over 5 years to get to the bottom of my issues! My symptoms were so varied.... ranging from carpal tunnel, elbow pain, circulation probs in cold weather ( Raynauds syndrome), heavy fatigued arms, neurological issues in my hands ( this lasted for over a year but it then subsided on its own accord ), neck pain, shoulders and back probs etc etc, all the above coming and going long term. At times I would be absolutely fine but when it returned would knock me completely! 3 weeks ago I underwent surgery for a first rib excision, which I'm still recovering from and I am still due to have the same procedure on my left side too.
I was eventually diagnosed as having bilateral Vascular/arterial TOS by my surgeon ( who is great) after I was referred by a PT ( thank goodness ) who picked up on the fact that I may of had a vascular problem. She performed various tests such as Adson's and Roo's which resulted in me losing my radial pulse and both my hands turning white!!!!
I know that I have along way to go yet but I'm hoping that now I will be on the road to recovery/normality. Surgery was painful but I'm so glad that I've been worked on. I have hope.
Keep trying with your doctors, you owe it to yourself, and don't feel guilty for getting a second opinion. I let my local doctors intimidate me ( and in turn prolong my diagnoses) into thinking that I was being neurotic BUT inside I knew something was wrong!
Best of luck
From SD38

Glad you're on the road to recovery. That is good to hear. Did you notice an immediate relief in your symptoms? I have heard many say as much. What sort of odds are they giving you for a prognosis ? It's hard when the literature suggests only about a 40% success rate, long term. My fear is going through all of that only to wind up back at square one or worse.

I too have bilateral symptoms so it would be I'm guessing a double case of surgery though I know they can't do them at the same time. What are you able to do or not do while in recovery? Did you do any scalene blocks to confirm a diagnosis? I am guessing if there were circulatory issues involved then the case for surgery was probably more clear cut.

Will you return to work? Or?

Lately I am finding it hard to do little things like drive. The vibrations in the steering wheel seem to excite my nerves and it feels like a painful tickle. Frustrating and scary because I don't recall seeing that listed by anyone else. Seems people report more outright pain.

Oh the vibrations from driving esp on rough roads were very annoying for me, I didn't have high pain, just many bothersome oddball sx.. my pain levels mostly ranged 1-4 then up to 6 at the worst time (severe spasms).