Why? Because until you wrote that, I didn't know which type of doctor can properly test for TOS. I'm at a total loss at how to find out what's really wrong, but all my symptoms are those that occur with TOS. My doesn't believe it's a possibility because my hands are blue, that's her reasoning.

Also, a vascular surgeon deals with arteries and veins, correct?

I get severe pain when I move my arms behind my shoulder or raise them above my head. That would suggest that nerves are being impinged, I guess. WIth my arms resting on my lap whilesitting or at my sides,there is no pain. I don't have any numbness or tingling.

Would a vascular surgeon put my arms into the positions that cause pain and be able to diagnose my problem? So far, a neurologist and orthopedic surgeon haven't found anything. Both tests by these doctors did not involve touching my arms once. I'm lost, and scared, and don't know who I'm supposed to go to for a diagnosis.

Hey MIM,

I also didn't know about vascular surgeons until I got to this website. You need to start seeing several vascular surgeons right away.If it's not too much trouble, set several appointments so that you can get as many opinions as possible. If they are good vascular surgeons that know TOS, then they will put your arms in different positions. Just search for vascular surgeons in your area and call them up and ask their assistants if they treat TOS and if so, how frequently. Go to the ones that have many TOS patients.

I'm not sure how far you are from Pittsburgh, but the only guy I know of is Dr. Timothy Wu. He answered a question of mine on healthtap.com and he knows about TOS. Also, it looks like he takes many different insurance carriers.

http://findadoc.upmc.com/PhysicianBi...?EPCDID=138997

Another thing you can do is to request a brachial plexus MRI with your arms above your head, so that it will hopefully show the compression causing your symptoms.

By the way- I got an MR Neurogram, which didn't show anything at all. Then, I went to Dr. Collins at UCLA Radiology, who may be in the top 5 people in the world that understand TOS, and he showed me all sorts of compression with a MRI/MRA/MRV. He said to throw away the MRN and that it is complete crap. MRN's also are tough to get approved my insurance.

If I were you I'd stay away from chiropractors at least until you figure out what's wrong. --by someone with an MD, and really knows about TOS and similar problems. Many doctors don't know TOS even when they claim they do. I went to Mayo Clinic and was told by one of their top Neurologists that I have an "unknown brachial plexus problem and should continue taking pain managing medications until symptoms improve" even after I told him I'd already gotten the TOS diagnosis, but he and his colleagues rejected it- without doing any arm maneuvers. (I went because i had the appt date for several months and only got the TOS diagnosis days before the trip)
I insisted on an ultrasound just hours before my flight home, and he called me the next week with the results with his tail between his legs, telling me that my subclavian artery experienced high velocity with my arms in the 180degree position.

What did the collins mri show? And do you think it is worth it?

Oh yes, I really don't think there's anyone that knows TOS more than him. He saw all kinds of compression both in relaxed and hands-up positions. He told me what my symptoms were before I told him. for example, no doc has been able to explain the leg pain/tingling/numbness that I have developed in the last couple months. He knew that it was there because of blood getting diverted away from my spinal canal and to my arm because of compressed arteries that weren't getting blood to my arm.

After the 1-1.5 hour MRI, we sat in his office for around 4 hours going over all of my images. I just wished that I had more pain medicine with me because I wasn't able to fully concentrate, ask questions, or enjoy the great man that he is because of how much pain I was in. I hope to talk to him on the phone in the next couple of days to ask my remaining questions.

The report hasn't been completed yet, he normally takes about two weeks to finish it. He said he spends the initial 4-5 hours with the patient, and then spends another 4-5 hours doing the dictation for the report later. I'm definitely going to post the report on here once it's done. I'll never go to any other radiologist for TOS again.

Thanks- I just have NTOS and Degenerative disk disease with Osteophytes and foraminal narrowing in my neck.do you think he would be able to tell where the pain is coming from? Is your insurance covering it all?

Yes, he will be able to see what compression, if any, is going on. I don't believe that he does cervical MRI's and I don't know if he'll be able to comment on that. I also have an MRI report that mentions foraminal narrowing, but I've had several spine surgeons say that it is very mild. I plan on getting a cervical epidural in the next few weeks just to make sure I don't get any pain relief from that before I go into TOS surgery in a month.

My insurance does contract with UCLA but my claim got denied because I unfortunately wasted authorizations getting a brachial plexus MRI from a radiologist that doesn't know TOS and also a (according to Collins) pointless MRN. Hopefully the doctor that ordered it will help me to appeal it.

He also says there is no such thing as only Neurogenic. He says that by nature, nerves have blood flow, so it is always vascular as well.

That's fascinating because I also have the leg symptoms on the same side as my TOS and often felt there could be a connection between them, but didn't know what it would be.

Does the MRI help show the specific areas of compression, such as scalene triangle, clavicle and pec minor? Did you get more details out of this on why/where you have compression? And if you did, would that help the PTs?

Quite a few of the long timer's w/ TOS would eventually mention low back or hip pain.

I think there is an image or sketch in the sticky thread.. on how we can get tilted , partially due to pain or protecting of the worst side..hmm can't find the one I was thinking of.. it was a simple stick figure drawing...

Basically it is partially due to how the fascia is all connected, and the whole body compensations we make for usage or to avoid pain.

this site touches on the "whole" misalignment issue-
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2953353/

A well rounded whole body therapy approach is best, don't focus only on hands, arms, neck etc..