TOS Doctors in Northern California
 

Hello,

I am a 33 year old male who recently went to the ER due to my hand tingling, going numb, and turning white. After a ultrasound and CT scan I was informed that I had blood clots in my radial, ulner, and brachial arteries. Furthermore, the doctor explained to me that I have extra ribs coming off of my 7th vertebrae and that I have a condition called Thoracic Outlet syndrome which most likely caused my blood clots due to my cervical rib and clavical pinching my subclavian artery. Needless to say I was in shock! Besides the blood clots the only other TOS symptoms I have ever experienced were my hands going numb and tingling at night when I sleep. Within that same visit a couple of weeks ago, I ended up having surgery (mind you, after they tried TPA two nights in a row which failed to break the clots up) to remove the blood clots from me radial and and brachial arteries in my left arm, however, the doc said that the clots in my artery were grown to the artery wall. I am now on now on warfarin to prevent the formation of any more blood clots until I have surgery to remove the extra ribs. This is very dishearting due to the fact that I am an extremely active person who snowboards, plays basketball, lifts weights, rock climbs, etc. The thought of being on warfarin the rest of my life scares the crap out of me. I have become extremely anxious, freaked out, and somewhat depressed about this whole situation. I obviously would like to have this surgery done asap if there is no other way for me to live my life how I like. Therefore, I was wondering if anyone on here knows of a good TOS doctor in Northern California. I live in Sacramento, but would be willing to travel a little bit if that meant having a more experienced and competent surgeon. I have been reading posts on this site for a couple of days, and I feel that many of the people on here are very supportive and understanding of each others' circumstances which has helped me a little bit with my anxiety about my own situation hence the reason I am now posting. Any feedback would be greatly appreciated. Thanks for your time.

Did you check the sticky doctors thread? I am on the east coast so I travelled to dr Donahue in bostonnn

You may not need to be on warfarin forever.
If all goes well after the extra c ribs are removed and if any vascular repairs are made after it heals you may be off the meds at some point.

Drs & PT listings sticky - there may be some not listed on it yet.
Hopefully members will reply with more suggestions also.
http://neurotalk.psychcentral.com/thread135.html

There are two doctors in Northern California you will find mentioned, Avery in SF and Lee at Stanford. I've had consultations with both. I'd get an opinion with at least one, if not both. The more opinions you have the better you can make a comfortable decision.

I've researched TOS a lot over the past years and I would travel to see who I felt was the most competent and conservative. There seems to be a growing interest in Dr. Donahue in Boston and that's who I narrowed down on years ago if I ever blew a clot. Not a "little bit" of travel though for us.

Thank you for the replies! I have been looking around and have found a bunch of surgeons in Sacramento, San Fran, Los Angeles, etc. I am just a bit skeptical on most of them. I would really like to find someone with presitge like Dr. Donahue. I would love to see Dr. D, however being in California I am so far away, and I lack the funds to fly out there a few times. Furthermore, I don't have insurance, and I am just got hooked up with some low income program. Therefore, I am not even sure what they will cover as far as TOS. I am hopefully going to see a primary care physcian by next week to give me some referrals. Until then I guess I am just going to have to research as much as I can.

I have seen all 3 surgeons in L.A. I really liked Dr. Gelabart at UCLA.He claims he has a 90% sucess rate. I did not like Dr. Ahn ,Dr Mckenna just ok Its strange , I havent heard anything about Dr. G on this forum though- and dont know anyone who has had surgery with him. i would like to hear from anyone who has. I dont know how much out of town patients he does so his profile may be lower. He is part of the TOS consortium and very experienced. It might be worth a trip down to S.Cal-much closer. if I were going to look into surgery and wanted to travel I would check out Dr. Donohue, Dr. Pearl and Dr. Thompson but would highly consider Dr. Gelabart since I am in L.A.

Did you have surgery or are you just looking into it? Thanks for the info I will definitely look into him.

No i looked into it last year when I first got diagnosed and my dr. told me I would need surgery if I wanted to go back into my regular line of work. Seeing the surgeons actually turned me off from it, but I only have neurogenic issues. I have been doing PT and injections and feel much better, but am still not able to do my regular work. It changes all the time, so I am not ruling it out in the future if it becomes necessary.

Ahhhh, I see. Glad to hear you are doing well with it! :)

In my case I actually have cervical ribs which caused blood clots in my left arm. From what I am told the only way to fix it is surgery. :cool:

I have read some not so good things about James Avery, didn't go so well with Kellysf from our forum.

I did see Dr. Lee at Stanford. I didn't need my ribs removed so I did not have surgery with him.

It pretty much boils down to Dr. Lee @ Stanford in Northern California, if you send a PM to Agabor and/or Hollyjohnson71, they both had their surgeries with Dr. Lee at Stanford. Hopefully they will come on the forum and see your post. They seem to have done well then but don't know how they are doing at present.

Dr. Gregory Pearl in Dallas, Dr. Thompson in St. Louis, Dr. Dean Donahue in Boston are heard about quite often on the forum. And any others you might come across on the sticky list.

It's hard to get a referral from your physician for TOS surgeons, you pretty much have to do all the research yourself and go with a vascular surgeon who is competent and does a lot of these but is also conservative. I don't think Dr. Lee or Dr. Thompson could be called conservative though.


Good luck with finding the right one for you. You may have to travel and see couple of them before you decide whom to get your surgery done with. I would surely get couple or more opinions, if possible.