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
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