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-   -   TOS or ?? - REALLY confused ... (https://www.neurotalk.org/thoracic-outlet-syndrome/157400-tos-confused.html)

Anne4tos 09-19-2011 05:27 PM

343:

Your story is all to familiar. Believe I've been in front of close to 50 Doctors and tested for everything. Sounds like you are going down the same path. Not to frighten you, but MS, autoimmune diseases and Lyme should be ruled out as well.

In retrospect, I don't think a dx is that important, once you've ruled out anything medically major going on. Chances are everything will be negative.

Treat the symptoms regardless of what "label" is placed on you. Sometimes it's better not to be pigeon holed into TOS. Doctors and Surgeons will look at you and only see your thoracic outlet. As many people will attest, there is symptomatology which occurs in legs and hips, and throughout the body with this syndrome. We are not made up of parts and pieces, but all connected. Relax and don't worry about things you have no control of today. Your case could easily be resolved with trigger point therapy and you would have worried for nothing.

Vibrations, music, loud talking, feet walking on a floor, the hum of an airplane or car all resonated in my nervous system.

343v343 09-19-2011 05:49 PM

Quote:

Originally Posted by Anne4tos (Post 807055)
343:
Your story is all to familiar. Believe I've been in front of close to 50 Doctors and tested for everything. Sounds like you are going down the same path. Not to frighten you, but MS, autoimmune diseases and Lyme should be ruled out as well.

Actually I should have mentioned too, they did a Brain MRI which was ruled normal as well. Feared MS as well. I guess how do people treat neuropathy symptoms of a crawling nature? I do stretches and nerve glides with little to no help.

SD38 09-20-2011 02:56 AM

Thanks for replying..... Your my 1st!
 
Quote:

Originally Posted by 343v343 (Post 806915)
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.

Hi 343v343
At the moment I think it is too soon to say whether I have any improvements. I'm day 20 post op. Lots of niggles and aches, breathing is not great and sleeping is rotten..... Hey ho, all in the name of recovery I guess... or at least I hope!!! However I'm pleased to say that lots of the inflammation from the op has settled but quite some time to go yet.
I'm being signed off work by my GP every 2 weeks so far to see how I go. I have absolutely no idea what time scale I will be off work. I keep thinking that I'm okay to start gentle activities but soon feel the effects of the surgery..... achy, achy and more aches! I'm trying to keep a brave face in front of everyone but its beginning to dawn on me that recovery and return to work is going to be alot later rather than sooner.:( Unfortunately I'm starting to get abit frustrated that I can't get on with tasks yet or write (my first op - and due another on opposite side- was performed on the side I write with and I'm a classroom teaching assistant..... it doesn't look good for me ).
I still feel abit headachy after walking so I'm focusing on my breathing to try and improve my oxygen intake and help with the healing process and gently expanding my chest. I have realised that I breath very shallow, and when deep breathing feel very uncomfortable in my arms and back of shoulderblades????
I'm due to see my vascular surgeon in 4 weeks so will hopefully be fully informed to how everything went, what exactly was taken out, etc etc and what will happen regarding my left side. I must admit that its very unnerving to know that I have to go through all this again:eek:.... I just so hope it makes a difference for me. At least for the moment I can be grateful even though sore that my artery is not being squashed, with the first rib out there should be plenty of space for everything to settle.
Has anyone used Bio oil, I hear its good for scars? Mine are pretty big ( about 2and 1/2" wide above and below the collarbone:( so I would like all the advice possible to help heal and improve the look ( if possible ) to their appearance.
I hope all goes well for you.... This is not a nice journey we are on!
RE: work.... now thats a topic for discussion. Over the years I have reduced my daily hours significantly, and dropped a job ( playgroung duty in the school that I work) that involved ringing a bell and standing outside in all weathers ( aggrevating my Raynauds prob ). I now work 3 hours/day in the classroom..... Well hopefully, that is if they keep me on!?
Best wishes and take care. SD38

GaryA 09-20-2011 10:48 AM

Quote:

Originally Posted by 343v343 (Post 806566)
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 ...

Disc issues are rarer than you might think. Disc issues shout that something is wrong; to date your symptoms are a whisper, correct? The vertebral column is very well designed. It permits trunk extension, flexion, rotation. The vast majority of nerve problems occur outside the protection of the vertebral column. By necessity nerves must intermingle with muscles and their fascial coverings.

Your symptoms so far are light, and may never get worse. The mild compression of the brachial plexus you are suffering from is most likely caused by trigger points in scalenes, pec minor--anywhere along the path from C5/ T1 to the tips of your fingers. Before even considering other more drastic treatments you might visit a massage therapist trained in NMT and MFR. Excessive stretching may exacerbate irritation of the nerve sheaths.

TOS may not be the cause; it could be irritation in the carpal tunnel.

I think we've all at one time or another experienced mild nerve compression; whatever the cause, the body usually heals itself if not interfered with too much. Keep in mind that if we push our doctors, for your peace of mind they might prescribe against their own best judgment. IOW, trust your doctor till he gives you reason not to.

MarcS 09-20-2011 11:48 AM

Quote:

Originally Posted by 343v343 (Post 806325)
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 have almost the same symptoms as you, i also have bilateral nerve symptoms-tingling, burning, electrical shock like pain and muscle twitching.

I do not have any loss of strength, and no range of motion problems either.
Tests:
Blood tests: Negative
MRI C-spine= Negative
Tinell's test= Negative
X-ray elbow= Negative
Adson = Positive
First Nerve conduction test= Negative (Done by unexperienced doctor)
Second Nerve conduction test = Positive, brachial plexus compression bilat.
(Done by a guy with 50 years of experience doing these tests)

just wanted to tell you, that you are not alone: I have the same symptoms.

"Very scared and tearful, panicked beyond words" Describes my state of mind aswell.

:grouphug:

Hang in there.

chroma 09-20-2011 11:53 AM

Quote:

Originally Posted by MarcS (Post 807327)
Second Nerve conduction test = Positive, brachial plexus compression bilat.
(Done by a guy with 50 years of experience doing these tests)

So what's the conservative (non-surgical) solution to brachial plexus compression?

boytos 09-20-2011 01:05 PM

i recommend working on gravity, like that :

http://www.globalbackcare.com/articl...t-on-chair.jpg
http://www.surftilyoudrop.com/images/inversiontable.gif

343v343 09-20-2011 01:57 PM

Quote:

Originally Posted by MarcS (Post 807327)
just wanted to tell you, that you are not alone: I have the same symptoms.

Where did they stick the "needle" to determine the BP compression in the second test. I am going back to the Neuro to ask for a second test and if I am going to go through that discomfort again, I want to be way more thorough about where we're testing on my body.

How are your symptoms progressing or improving?
When you do the Adson's test do you get reduced or absent pulse? Have you found anything that helps?

SD38 09-22-2011 01:45 AM

You can't bet gravity
 
Quote:

Originally Posted by boytos (Post 807362)

Hi boytos
thanks for your suggestions, simple BUT effective!:cool:
I will give them a go ( GENTLY )....... post op 3 weeks: (first rib resection/excision and very tight around incision area and SCM).
From SD38:)

MarcS 09-22-2011 12:27 PM

Quote:

Originally Posted by 343v343 (Post 807377)
Where did they stick the "needle" to determine the BP compression in the second test. I am going back to the Neuro to ask for a second test and if I am going to go through that discomfort again, I want to be way more thorough about where we're testing on my body.

How are your symptoms progressing or improving?
When you do the Adson's test do you get reduced or absent pulse? Have you found anything that helps?


The guy didn't use needles, he used those sticky pads. He started testing me for Carpal tunnel and radial tunnel but all those where negative - then he placed the electrodes on my chest near the BP - and he concluded that that is where the compression is - bilateral.

If you like, i can probably upload the charts from the test. :hug:
As far as i can tell, a positive nerve conduction test is very rare in this condition.

Symptoms are atm progressing i think, its hard to say - but its not improving, i just need to find the right amount of stretches and excercises.

Regarding the Adson test, my pulse went completely away. Tiger Balm and positive thinking helps at the moment :)

@Chroma: I need another appointment with my rheuma, awaiting a MRI scan of my BP - then i'll probably get the verdict, whether its surgery or PT.


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