i dont understand how a doctor couldn't believe in tos

what if you bombed a vascular test, would he still not believe in it?!!!

I am assuming you are in Nebraska near Omaha.

What kind of Dr. was the Spine Dr.? Neurosurgeon? I think Neurologist when I think Spine Dr. There are some Neurologists with knowledge of TOS, but not many. Vascular Surgeons have the most experience with TOS. Unfortunately there is no definitive imaging for TOS, it is mostly a clinical diagnosis.

You may want to check out this Physiatrist in regards to diagnosing TOS and possibly getting some further direction.

http://www.nebraskaspinecenter.com/o...x?ID=8&Section

He did his residency at Washington University Medical Center - Barnes Jewish Hospital, home of Dr. Thompson's Thoracic Outlet Syndrome Center.

I also found great benefit from massage once I found a therapist with TOS experience - http://www.bestomahamassage.com/moinca.shtml

Hopefully, you can get better without surgery. If you require surgery, you may have to travel out of state for an expert TOS surgeon.

Holles,

I agree with Marc. The physiatrist is probably the best route to go. I've been dealing with TOS and/or spine issues for nearly a decade now. In my own experience, I've found neurologists and neurosurgeons to be dismissive towards TOS even after having a very successful outcome from surgery. I think it has more to do with what they've seen during the course of their career than an outright dismissal of TOS. I had a neurologist once tell me that he liked the interesting cases (MS, Parkinsons, epilepsy).

In my experience, the physiatrists were the most open to TOS. You may need to see more than one physiatrist before you land with a good one.

Regarding testing for TOS, again, Marc is correct. It is mostly a clinical diagnosis so don't get frustrated that nothing shows up.

Thank you Sheri & Marc!

The spine guy was Dr. Longley from the NE spine institute, an ortho. Must be one of those Dr.s who think if they can't operate on it, it doesn't exist. He did give me an rx for therapy with the note of "TOS". Online, his dx was degenerative disc disease.

I will call both your suggestions, Marc. You are amazing.

Some Orthopedic surgeons do spinal fusions, but I wouldn't call them spine doctors (no offense to Orthos). Neurologists are spine doctors and Neurosurgeons are spine/brain surgeons. I wouldn't let an Ortho touch my spine or my thoracic outlet...but that's just me. ;)

Hi Holles, I actually found out I had TOS after blood clots formed in my chest and arm turned blue and swollen. The Vascular surgeon I met at the hospital though, confirmed his suspicions of TOS on the CT scan. He could see the area in the scalene triangle was too small. If you have not had CT scan may be worth the shot, since no tests will actually show compression. I know its not a common test and take a TOS savvy dr to see. Not really sure. So sorry for your pain and frustration! Lauren

Holles Don't give up. I was diagnosed after a clot in my subclavian vein moved to my lung. The first vascular surgeon I went to see said I had TOS but didnt do much in the way of test's for a more formal dx with all the facts. Check the doctors list above to find a Dr close to you. You might find that a neurologist useful also to check on the nerves as well. Good luck. Your not alone there are many of us who have been on the TOS round about.

TOS is a group of symptoms, but I'll bump up my writing on "testing" which is the best I can do, not being a doctor.

I have been fighting work comp for 9 years, but I just won a 100 percent case. I strongly recommend finding how to a get a copy of Dragon voice software, but you need to see an attorney and as TOS progresses, you need an advocate. Your doctor (if work comp) can write you prescriptions to get home aid health, if you get to the point that you can't drive, get groceries, dress, change your bed, etc.

Hopefully you will not get that bad.

Well, now work comp has told me that, since no one can find anything wrong, they don't feel my pain is work related. Really. I have an appointment with a physiatrist next month (the earliest I could get in) on my own insurance.

Another question for you experts out there - when showering a couple days ago, I reached down & back to wash my leg & the left shoulder girdle went "clunk" and moved. Has that happened to anyone else? So weird. Hurt like heck, too.

Supposed to be going back to work Weds but guess I'll have to quit. No point in injuring myself further.

I am facing similar issues with workmans comp. Except I had a wc surgery for frozen shoulder, torn labrum, rotator cuff tear, and had my bursa removed to make space. After the surgery, my hand was tingly... for almost a year now. Had emg, shows slow response annd also muscle atrophy in hand. Pain has extended to my arm and shoulder. Shooting pain and numbness down arm. WC says it is not related. Getting treatment through my own insurance but will soon be MMI through comp. I want my case to remain open because the TOS is related, just have not found any documentation showing that this could be from the surgery or pain pump.