Thanks everyone for the feedback. Yea, I understand the "tos?" also. Doppler shows total occlusion of my right extremity in all positions but the neurologist Friday said "possible tos".

I've talked with Dr. Urschel's office. He is in Dallas, which isn't too bad of a drive from Houston. He is not on any insurance plans as in-network though. If I went to see him, it would end up being out of network. I think it would be cheaper to fly to Denver or wherever than see someone out of network.

I've seen Dr. Azizzadeh (surgeon) and have called Dr. Noon's office (another surgeon. Dr. A was a little too quick to cut for me. I don't know how Dr. Noon is yet... I'll have to drop all my records off for him to review before he'll even see me. I don't think he treats unless he's going to do surgery. I'm not ready for that yet. I just want someone who can manage my meds (my gp will but he's never see this), and someone who can refer me to a PT that will help and not cause more damage.

I went to my PT last friday and realized that with his "first rib mobilization", he was pressing on my upper chest (just below my collar/sholder bone the first couple times. This last time he was pressing on the top of my shoulder. I even asked him about where he was pressing and said "well isn't it here? (indicating the place he was pressing the first few sessions)". He said no, that you wouldn't want to press there cause you could press on the artery more. I KNOW where he was pressing. It felt bruised for 2 days afterward. So he was either pressing in the wrong place my first couple sessions or he is pressing in the wrong place now. Where he pressed Friday hurt, but not the bruised feeling for days like the first sessions.

It's so frustrating. I've called so many doctors and most are like "huh?". or "only if it's neurological"... "only if your wanting surgery now"... no clue who would even say "only if it's vascular". I haven't even found the doctor that would say that one. I guess tomorrow's calls will be for a physiatrist or osteopathic dr.

Colleen- Sorry (again) to hear about your dealings w/ the docs... I like Jo's idea of an osteopath. Like many others here, I would be wary of a new doc that wants to cut right away. Good luck with the phone calls on Monday!

My concerns with both of the vascular sugeons that you have seen is that even though both are willing to cut.....but not help with the meds, the follow up, getting the right PT, etc. You will need life long management of this, irregardless of if you have surgery and it doesn't sound like either one of them will be a help in that department.

I had a similarly frustrating time getting a dx of TOS. A WC doc told me I had it, but obviously could not treat me for it. I got the "it's all in your head" treatment from the docs I could find. I called a vascular surgeon mentioned at a TOS website and begged for help. He and his team did a very thorough eval and made the dx, then he sent me to a neurologist (who would follow me pre and post op if I needed surgery) and a PT very skilled with TOS. As it turns out, my pure TOS symptoms decreased after myofascial release with the PT and I don't need TOS surgery. Now those symptoms come back when I have increased neck pain from cervical radiculopathy (maybe scalenes spasming ?) because I have double crush problems and RSD . So, if I went to one of those surgeons you found, I would have had major surgery and would still be in the same boat that I am in now....or worse if the RSD got worse.

Could you call the "Denver 3" and ask if they could refer you to a neurologist and PT in your area ? Maybe even fax you recommended PT treatments ?

That is exactly my concern. Noone seems willing to manage this unless I want surgery and those are the 2 doctors that I can find who are listed on websites as treating TOS in Houston. The vascular surgeon says there is neurological component and the neurologist says there isn't because my EMG/NCV only had a slight abnormality at the ulnar nerve (which is, according to him, not related to TOS).

Are the "Denver 3" the doctors at the Vascular Institute of the Rockies (Brantigan, Synn, & Annest)? I was actually considering flying to Denver for a consultation since they seem to actually treat this and they accept my insurance.

When I was told I had to have rib resection surgery I consulted with a very well respected Orthopedic surgeon in my area whom I have trusted with my child and my husband (the NBA and US ski team trusts him too). I cant say enough good things about this man, he knows his stuff! Anyway, I think so highly of him, that I called him to see if he would do my surgery. He said that he would not do it because TOS should not be treated by Orthopedic surgeons (they do joints, ligaments, tendons, etc.) and told me to stick with the specialists in Denver and that is what he would do if he were in my shoes...
Just food for thought...