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Thoracic Outlet Syndrome
For 1.5 years now, I have been experiencing pain and numbness in both hands, stronger on the left side, specific to the ulner nerve on both sides.  My question concerns the difficulty I have had in reconciling the various diagnoses and viewpoints of the seven doctors I have consulted and multiple diagnostic tests I have had performed.  The condition is persistent enough to cause a good deal of difficulty for me at work.  (I am a writer and academic, so the ability to write is imperative, but typing and writing also worsen the symptoms.)

I am looking for some clarity on the diagnosis and and a sense of direction in deciding what to do next.  Four questions:

1) I am told that "Thoracic Outlet Syndrome" is a controversial diagnosis.  What exactly is the controversy and how strong are the arguments for/against TOS?  Should I be wary of a thoracic surgeon who is a specialist in TOS, authoring major articles on the subject?

2) How would you suggest I handle the variety of doctor's opinions and diagnoses of my symptoms?  Are there specific tests I should request to get a more definitive diagnosis, ruling in or out TOS, cubital tunnel, problems in the cervical spine?

3) If i were to get the surgery for TOS, what are the risks and what are my chances of a complete recovery without recurrence?

4) The thoracic surgeon I consulted does not accept my insurance.  Would you recommend I look for one of his colleagues at the hospital, or doctors with whom he co-authors articles on TOS?


Here is the complete history:

Hand Surgeon - initial diagnosis of cubital tunnel; later, tenative diagnosis of thoracic outlet syndrome

Physical Medicine Doctor #1 - conducts EMG, refers to thoracic surgeon

Thoracic Surgeon - confirmed diagnosis of thoracic outlet syndrome, left side only

Physical Medicine Doctor #2 - notes bilateral symptoms, suggests possible location of nerve compression in cervical spine

Pain Management Doctor - corticosteroid in cerical spine, unhelpful

Neurologist - currently considering return to cubital tunnel syndrome, trying to rule out TOS

X-Rays - no cervical rib found, some curvature in upper spine

Nerve Conduction Studies/EMG -  3 tests: all indicate ulner neuropathy.  #1, left side only, location inconclusive, #2,
bilateral, indicates nerve compression in brachial plexus

MRI - cervical spine, small bone spurs and minor problem with one disc

Arterial & Venous study - compression bilateral, but much stronger on the right side

Physical Therapy - unhelpful

Ergonomic improvement - minimally helpful in pain management

Corticosteroid injections in cervical spine - 3 times, unhelpful

Naproxen - unhelpful

Gabapentin - helpful in pain management

Tramadol - helpful in pain management

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