I have vascular TOS on one side due to injury (fracture), repair, scarring, excessive calcification. Have been told rib to clavicle spacing is fine, not the problem. I have a history of strong keloid formation, this was not the first time it showed up.

Have seen a number of doctors, have received suggestions of just rib removal, don't touch anything else, remove rib, muscles, scars, rebuild clavicle (why? "we just do"), botox, arteriograms, venograms, been warned not to ever have surgery because of the scarring issues, been warned not to have surgery because I am showing characteristics of CRPS already, been working with a pt who has been doing a very good job of mostly holding it at bay, but am still slowly slipping downward. (Oh, and then there are the two local vascular surgeons (same office) who say it's not vascular at all, they don't believe the MRA, the CT, the ultrasounds, the symptoms....but we'll just forget them...)

I am in the Northeast, but location doesn't matter. Dr. D. in Boston is not an option. (Don't ask, I'm tired of telling, and it only upsets people. He is just not an option for me.) So who would you recommend, given that this is vascular, not neurogenic, traumatic origin, complicated by scarring, not anatomical, basically an atypical, difficult situation? I can go anywhere in the country if the situation will be right for me.

(I also have vision problems, making searching and reading old posts difficult, is why I am asking for leads instead of researching it myself.)

In the past Dr Brantigan (Denver) was said to be one that addressed other TOS and/or botched surgeries.
But not many mention him now..not sure if that is mainly a location reason or what...

I believe past members have mentioned sending copies of your files/imaging to Brantigan , and some of the other top docs, so they can look it over to see if they could help or ?

And I don't know how many drs would try surgery if scarring & poss CRPS are in the mix...but the final option is usually yours..

If you find the names of the surgeons that operate on top athletes for TOS those should be good , I doubt top athletes/team managers would risk a career by not seeing the best rated drs.

Dr. Gregory Pearl in TX has done quite a few major league baseball players..
Hank Blalock -ballplayer- surgery was done by DR Urshel @baylor medical center in Dallas

Brantigan, Pearl, Thompson and Annest seem to be the ones setup for out-of-towners (not named Donahue...I remember your experience).

I would personally choose Brantigan if I were in your situation.

I truly don't discount people just because of age, however, Brantigan is 70 from what I see. Could that be why he's not being mentioned much anymore--he's heading to retirement? I have had very poor luck with the older doctors around here (such as the one who ended up shouting so loud my ride in the waiting area could hear, "I DON'T KNOW WHY YOU HAVE PAIN, THERE'S NOTHING WRONG WITH YOUR HAND, YOU HAVE THE FINEST HAND I HAVE EVER SEEN IN MY LIFE!!!!!" She greeted me with wide eyes and shocked face and an "Oh my God, what the ..." Another one had his assistant and technician playing with her cell phone and laughing at things while standing right next to him while he read my papers and questioned me, and even tho he had 8 pages of info I had had to fill out, his report had most of my history WRONG.) My dentist, however, has got to be approaching 70, and he is the most amazing and skilled dentist I have ever found in my life.

Jo*mar, I was trying to stay relatively local, before. I don't know how I will travel across the country and survive the trip (big motion sickness issues, especially with planes), but hey, that would solve the problem anyway, wouldn't it. (KIDDING!!! Twisted sense of humor, do not worry about me. Made a crack like that to a doctor once, had to go see a shrink to prove I wasn't suicidal, yeesh.) Gotta know who to send records to in the first place. With all I have gone through in the last 3-1/2 years, not just the TOS, I don't have heart or strength for wasted attempts or inviting more disappointment than necessary. I don't need more crazy old doctors shouting at me, arrogant doctors, doctors who just refer me to other doctors who refer me to other doctors who ..., doctors who promise, explicitly promise, that they will not pass me off and they will at least figure out what is going on, then after exam and records, they just disappear--never call me back, never call my other doctors back, never send a letter or a report or notes, nothing... I've got to get it right, if I start to pursue this again.

Sorry ur so bitter!! I know the feeling going from Dr yo Dr looking for answers. U have to keep plugging away! U cant rely on anyone but ur self to get better. I know there rare but there a few good ones. I found one on my own. Took me 8 yrs to get dx for tos! And 8 surgerys in 10 yrs. ( not all for tos related). My tos surgeon is the most kind, compassionate, intelligent, well mannered Dr I have ever met!! And I have seen a lot of drs in past 10yrs for other nerve and orthopedic issues.

Anyway I just wanted to ask why or if urv seen a vascular tos surgeon, since ur problem is vascular? I haven't seen him but know of a very well known v.surgeon who does vtos. Dr Kwolek at mgh in Boston. Look him up.
Best Wishes
Rhonda

seen vascular and cardiothoracic doctors, which ever they kick me over to, sometimes records have been sent to one, they tell me to go to the other.

mgh is not an option, even if Dr. Kwolek is in a different department than Dr. D, he would have to contradict a colleague and acknowledge a major mistake by him as well. "Tainted by association" is the official term, I believe.

so i cannot use what is probably the very best location in the country, which is also within driving distance, through no fault of my own. hard not to be bitter.

Sorry to hear of ur bad exp. Did u have a dx related mistake? Just curious u dont need to answer back. Have u thought about going out of state to see Dr freishlag a vascular surgeon at John Hopkins? Vtos is uncommon so not a lot of exp drs.
Ive seen several drs at mgh they dont all agree w eachother. I wouldn't completely rule it out.
Rhonda

I know it's hard to think about traveling across the country because that is truly a major undertaking, but I just wanted to add in that I had a very positive experience with Dr. Thompson in St. Louis. He did my surgery last June for arterial TOS. I know your situation is more complicated, but I found his assessment and diagnosis to be very organized and precise, and I have been very pleased with the outcome of my surgery.

I wish you the best!

Hi JR1077 - I've seen Dr. Thompson and I did like him but wasn't convinced by any of the diagnostic tests he used.

I am wondering -- how did he diagnose your arterial TOS? What diagnostic tests did he use? What were your symptoms?
Also -- how are you doing post-surgery?? Would be great to hear back from you.

Hi! Sorry to just now be responding - I had a baby on Sunday!
You probably know quite a bit about Dr. Thompson already since you saw him.
I'm happy to answer your questions about my experiences -

how did he diagnose your arterial TOS? What diagnostic tests did he use?
I had an MRA where I moved my arms in various positions. This clearly showed the aneurysm I had in my right subclavian artery (with my blood flow pretty much being shut off on my right side when I lifted my arms above my head). I also had a chest x-ray that showed my pronounced extra rib on the right side and a much smaller (non-problematic) extra rib on the left.

What were your symptoms? I didn't have many symptoms actually, but he thought it needed to be repaired because of the aneurysm. I did realize after the surgery that it was causing me more muscular/postural problems than I realized with the things I had been doing to compensate for the uneven anatomy.

Also -- how are you doing post-surgery?? I'm over a year out now, and I'm doing really well. The month or so after surgery was rough, but I know it was worth it. I was also in PT for several months which was helpful. I'm relieved to have the surgery behind me and not have to worry about the
aneurysm any more.

I wish you all the best moving forward!