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


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Old 05-23-2013, 06:38 AM #1
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Default Overwhelmed and frustrated

Almost 2 years ago, I injured myself at work lifting a box that I anticipated was only 36 lbs. It was 70 lbs. I lifted it from wait level, turned with it and the box forced my arms to extend while the box was still in my hands. I had immediate pain in my bicep area. That followed up with shoulder and neck pain.

Work comp wouldn't allow for me to see a specialist until I had exhausted 8 weeks of PT. 4 months post injury, I finally was seen by a specialist at MSU, a MRI was done and I had a slap tear with possible rediculopathy. The surgeon evaluated me and within 60 seconds dx me with TOS secondary to shoulder and possible neck injury. Work comp would only allow the shoulder surgery before allowing a MRI of C-spine. Shoulder was completed Dec 2012, followed up with PT 3 x's a week, and OMM weekly. This went on for 5 months and WC finally approved a C-Spine MRI which showed 2 herniated discs. PT was treating me for TOS and radiculopathy as was OMM previous to the MRI.

I have suffered with left hand deficits (weakness), pain so severe in my hand I cannot open it at times, pain in the pectoral and scalene muscles, burning/searing pain in the scapulae, and what I call "fin" ( constantly dropping things or the inability of fine motor skills in the affected hand.

I was scheduled to see a neurosurgeon. Work comp decided that I was fine after an IME and that doc said I only had a sprain of my shoulder. hahaha So they cancelled all of my appt. and cut me off of comp. Prior to this I was 115 lb, ran 5 times a week, and lived a very active life.

Hired an attorney, signed up for medicaid and it took months to find a surgeon that would see me due to this being comp.

Had an EMG done that showed nerve issues at C6-7 and T-1 with muscle recruitment to work my hand muscles ( Specifically the thumb and forefinger)

Since March, I started having "infections". These infections are only on the left side (affected side). Left ear infection, left tonsillitis (with no bacteria/virus confirmed after cultures were done), left breast infection and now a front upper tooth on left side. All of these "infections" I believe are related to TOS HOWEVER EMG doc said no to TOS and the orthopedic neck surgeon laughed in my face and said this was a non existence syndrome unless it is congenital from an extra first rib.

OMM was constantly fixing first left rib displacement. I am frustrated. I want to feel normal again. Surgeon said that neck repair probably wouldn't fix my arm/hand deficits.

Where do I go from here. I am only 33 and want to be active without pain that follows normal activity. I live in Michigan. Any advice would be appreciated. I am a nursing student and this crap is affecting my ability to do some of my clinical requirements because I cannot lift patients without being in agony hours. Even normal range of motion within my neck causes follow up pain that will last hours. I know that nerves are being affected or impinged just from the slow lymph flow/emptying..... UGH thanks in advance.
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Old 05-23-2013, 06:46 AM #2
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I also have tinnitis, headaches and diplopia at times. I believe this is TOS but how do I get a professional to really follow up and assess correctly?
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Old 05-23-2013, 09:05 AM #3
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You need to find a Dr. who really knows TOS. If you read on these boards you will find that there are not many who do and you may need to travel. Dr. Donahue at Mass General in Boston is one such Dr.

I've noticed a recurring theme on this board which is that until you see one of these Dr. who really knows TOS, it seems to be an endless stream of frustration. To the Dr. who laughed at you, he's a fool and it makes me angry to hear that that happened.
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Old 05-23-2013, 04:55 PM #4
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EMG cannot effectively diagnose TOS. Most physicians are taught in Medical school that TOS = Cervical Ribs, nothing more. They don't know what they don't know about TOS.

Where are your cervical herniations? Was fusion surgery recommended? You want to take care of any cervical issues before tackling TOS treatment. You may not even have TOS (but it sounds like you do).
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Old 05-23-2013, 06:32 PM #5
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Is the atty for the w comp appeal?
Def need one as it is a fight to get proper dx & tx esp when a possible co injury with overlapping sx.
Especially if no witness to the injury and no firm test to prove TOS was the cause of said injury..

IME reports are usually a joke, make sure any incorrect information is noted and the corrections are made and atty and dr are aware & note them.
This may help your claim/case.

Seek out the best TOS doctors & therapists- many are mentioned in our sticky thread as well as in other posts.
Your atty will probably have to help with getting approvals for these specialists.

Has PT addressed trigger points & spasms?
(tinnitis, headaches and diplopia ) - could be from TrPs & spasms

There is good PT, and cookie cutter PT - I hope yours is good and helping you to feel better. Try to locate advanced PTs with extra training & techniques.


PS - if you have an open claim/case it's best to limit details of the case that might identify you.
Names, city, appts/details, date of injury etc.. anything that might be searchable by the other side..
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Old 05-23-2013, 07:12 PM #6
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I gotta say that most doctors do not believe in TOS and will say you are fine. If you walk in there with workers comp insurance, they will all the more so say this to you.

Any chance you can use your own insurance? Just a thought?

No one started believing me until I used my own insurance. Sad but true.
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Old 06-01-2013, 12:28 AM #7
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Default Tos

I am a nurse, they found cervical ribs when I was 38. Had the surgery and had to slow down work until finally I found a way to survive without nursing. If you do have TOS it usually is a life long problem. It has been for me. I had to adjust my whole life around it. I am not trying to scare you, just telling the truth. Nursing is a very stressful occupation and stress makes TOS worse as you probably already know. The surgeries do not stop all the pain because they are major surgeries that change your skeleton forever.

I also had chronic infections everywhere, I finally started taking tons of vitamin C 5,000mg a day and all the infections just stopped.....was huge relief as the infections were very painful. you have to work up to that dose of vitamin c but this really works. I believe the stress from pain every day causes our immune systems to malfunction. good luck to you.
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