Hi Again,

In my experience, the specialists I found most helpful were:

1. Thoracic Surgeon*****
2. Neurosurgeon
3. Ortho

Support Specialists (necessary)

1. Rheumatologist for accurate DX
2. Anesthesiologist for nerve blocks..part of DX.
3. Physiatrist (Pain Specialist) for ongoing treatment and DX.

It is best to use one physician for all RX and treatment after all other specialists have weighed in and done their 'thing'.

I went through about five Orthos...hand specialists, etc... before I was finally seen, (purely by chance), by a Scoliosis specialist (Ortho). HE Finally suggested TOS and referred me to a Thoracic Surgeon.

The Thoracic Surgeon worked with a 'team' of other specialists in the area, who as a whole, could provide the proper diagnosis and treatment.

If I had not been seen the specialist for my back (!), I don't know how long it would have taken. It was 10 months before I heard the term TOS. I believe that, because he was not focused on my hand (carpal tunnel, etc.), he was able to look outside the box and send me to the (wonderful)
Thoracic/Cardivascular Surgeon.

The Thoracic Surgeon had the facilities for the circulatory testing. The Rheumatologist ruled out other soft-tissue problems...such as MS. The Physiatrist was a specialist with EMG, SSEP type testing for neurological diagnosis. Also treated Depression, (a given), Fibromyalgia, and/or whatever else may apply to you, if anything.

Unless you have something like cervical ribs, expect to be sent to Physical Therapy, (which is apparently standard operating proceedure), when first daignosed. If PT is not helpful, you will likely be labeled as a 'Surgical Candidate'. WARNING: that ONLY means that PT was not the 'cure'. It does NOT mean that surgery is necessarily a good idea for you.

This is why it is imperative that you have honest surgeons who don't just operate on every patient who walk through the door.

Anyway, I am confident that you will find the 'right' specialist for you. I do believe that you will be able to locate them, either through referrals from the Specialists on our 'list', or through the Ortho suggested above.

Be sure to request X-rays of your cervical/thoracic area to rule out cervical ribs or other obvious cervical issues. Cervical testing with MRI, etc. is crucial as you may not have TOS at all.

Surgery to remove cervical ribs seems to result in the most successful resolution of TOS. Otherwise, the journey will be more involved, but manageable, truly.

Anne