I'm seeing a DO--one that I had to find that was highly rated. I travel over an hour to see her, and she doesn't seem to want to address TOS at all because she thinks my hands should be blue and there should be pain all the time, which isn't the case for me.
I'm new in my area and the closest doctor of any kind is 45 minutes from me.
I found the list of DRs & PTs in NY, so I guess I'll have to go to one of those to get a diagnosis.

I never heard of a MRNeurograph. Can my DO prescribe this? I would go to King of Prussia if it would help me. Thanks

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.

Surgeons/MDs

Maybe you should start a new thread and we will do our best to help guide you in navigating treatment options.

My DO didn't believe I had TOS either.

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.

If the DRs don't touch you , that is a big sign, IMO.
At the very least they could refer you to an advanced PT for evaluation, those PTs that are highly skilled w/ extra training & experience will do the hands on tests. Then a eval report can be made to the Drs.

But it sounds like you need a lot of help getting thru this, please make a new thread for yourself, or let me know and I can make one for you if you need help with that.

Many drs say or think they know about TOS, but they only have a very limited or mistaken idea of it.

See or drs list sticky thread and our useful sticky thread, it will give you a major crash course on TOS.

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.