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.

Dr Julie F just transplanted to Sacramento from Johns Hopkins Chicago.

I have added 2 links for your reading pleasure. Maybe, she could refer you to more local TOS specialists in the area

Dr. Julie Freischlag, UC Davis vice chancellor for human health sciences and dean of the medical school.

http://www.bizjournals.com/sacrament....html?page=all

http://www.ucdmc.ucdavis.edu/publish...o/search/11673

Julie Freischlag trained at UCLA under Drs. Hugh Gelabert and Samuel Ahn. However, I haven't seen many positive reviews here on this forum (search her name).

Freischlag does seem to publish alot on TOS.
Here is abstract from one of her latest publications....
Not sure what to think of the 91% success rate that she reports.

Ann Vasc Surg. 2014 Jan 21. pii: S0890-5096(14)00046-6. doi:

Diagnostic Accuracy of Physician and Self-referred Patients for Thoracic Outlet Syndrome are Excellent.
Likes K1, Rochlin DH2, Salditch Q2, Dapash T2, Baker Y2, Deguzman R2, Selvarajah S2, Freischlag JA2.

OBJECTIVES: The purpose of this study was to categorize patients referred to a specialized thoracic outlet syndrome (TOS) practice to determine the diagnostic accuracy of those who are physician and self-referred.

METHODS: Demographic and clinical data on all patients who were referred for TOS between 2006 and 2010 were retrospectively reviewed from a prospectively maintained, IRB-approved database and patient records.

RESULTS: Between 2006 and 2010, 621 patients were referred for TOS (433F/188M; mean age 39 years (range 10-87)). Five hundred seventy-one patients (92%) were diagnosed with TOS, with 421 (74%) neurogenic, 126 (22%) venous, and 24 (4%) arterial TOS cases. Of the 525 physician referrals, 478 (91%) had TOS and of the 93 self-referrals, 90 (97%) had TOS. The 421 patients with neurogenic TOS (NTOS) (304F/117M) had symptoms on average for 56 months (range 1-516). Two hundred seventy-one patients (64%) were initially treated with TOS-specific physical therapy (PT), and 100 (37%) improved. One hundred seventy-eight patients (42%) underwent a lidocaine block and 145 patients (81%) had a positive block. 74 patients (18%) underwent botox injections; 44 (60%) were positive and the average number of botox injections was 1.3. One hundred forty patients (33%) underwent transaxillary first rib resection and scalenectomy (FRRS) and 128 patients (91%) improved. Of patients undergoing FRRS, 92 (66%) had a lidocaine block, 82 (89%) of which were positive. Of patients with a positive lidocaine block, 74 (90%) improved following FRRS. Of patients undergoing FRRS, 31 (22%) underwent botox injections, 15 (48%) of which were positive. Of patients with a positive Botox block, 14 (93%) improved following FRRS. Average length of time between initial visit and operation was 6.4 months (range 2 weeks to 34 months) and average follow-up time was 13 months (range 1 week to 49 months).

CONCLUSIONS: 1. Both referring physicians and patients are very accurate in their preliminary diagnosis of TOS (neurogenic, venous or arterial). 2. In a specialized TOS practice, two-thirds of patients are sent to TOS-specific PT and one-third improve from this treatment alone. 3. One-third of patients referred for NTOS eventually undergo FRRS with a 91% success rate.

I am in the South Bay and have seen both Dr Lee and Dr Avery.

I am 51 and have TOS and degenerative spinal issues. I have had two cervical fusions C5-7, (the first one failed). I used a different surgeon who was not in the area for the second surgery. In the last five years I have had the two spine surguries, both shoulders have torn as if I was a professional pitcher due to the TOS and the damage caused by lack of blood flow etc. My orthopedic surgeon told me that my ligiments and tendons were shredded, that he hadn't seen anything like that on a woman who by outwards appearances looks healthy.

It was at the kind pushing of my orthopedic and neurosurgeon that I find a surgeon who understood TOS. Not an easy thing to do.

In summary Dr Lee and his staff did a bunch of tests and then Dr Lee came in and told me my body was already too damaged for him to help me, that I was not a surgery candidate. That I would have needed to have come to see him before I was 40. I left devastated.

After a day or so I got over the emotional blast of Dr. Lee's comment and remembered everything I had read on TOS and how most people do not become sympomatic until they are in their 40's. I also thought to myself why the heck did I go to a Stanford Doctor? My experiences with them have been awful. Being marked for a nerve block on the wrong side and having to stop them. Being told by a Dr who did a CT mylogram that there was nothing he could do for me and yet the mylogram showed my fusion had failed and my neck was unstable. Stanford in my opinion and from my experiences is running on past reputation. Also if I needed to see Dr. Lee before I was 40, why make the appt and run all the tests that they billed at an outrageous amount of money?

Dr Avery on the other hand spent over two hours with me. Going over all my symptoms and for the first time in years making me feel like I wasn't loosing my mind. He also said that surgery was the last option and I wan't there yet. That surgery was tending to make people worse, not better. He just moved from Sutter health to Palo Alto medical group.

There is one more doctor in Salinas who is now listed under TOS. That is recent and I don't remember where I saw it. I do know it was on a TOS list.

What I can tell you is that by a huge margin UCSF is the premier medical facility in Northern California now. The doctors that are listed in the sticky are no longer there but getting into their system would be a good start. They have imaging equipment other facilities in the area do not have etc.

Good luck.

I had surgery with Dr. Avery in 2005 and I came out worse as a result. He was very professional and thorough in his explanation of the surgery, risks, etc. He claimed to make 85% of his patients better. I spoke with him once after my surgery failed and he told me he was having better luck with surgery because he was picking his patients more carefully. I asked if this meant I shouldn't have had surgery in the first place; he didn't respond.

Did I understand you correctly, that Dr. Avery is now saying surgery is tending to make people worse, not better? I would tend to agree based on my observations on this board, but I'm surprised that Dr. Avery may have reached that conclusion.

When I first started reading about TOS in 2003, most doctors claimed that 1/3 of the people improved with surgery, 1/3 stayed the same and 1/3 got worse. A few years later, the success rate jumped from 33% to 85%. It was never clear to me what changed to justify that huge change in surgical success. Over time, though, it seems like the 1/3 rule is closer to reality for neurogenic TOS patients than the 85% figure. Good luck with whatever you decide. Please keep us posted. I'd love to hear if Dr. Avery's thoughts on surgery have evolved.

Take care,
Kelly

Dr. Gelabart told me he had a 90% success rate. Maybe thats where she got it. I think it depends on how they define "success" I think it just means less pain.

Dr. Avery did say that 85% of his patients were better but he couldn't predict how much better. So I suspect you are on to something.

Freischlag
 

Think it was the other way around. Ahn trained under Dr. Freischlag when she was the head of vascular surgery at UCLA, then took her position when she left for Johns Hopkins. Dr. Gelabert then trained under Ahn. When Dr. Ahn went into private practice, Gelabert assumed the head of vascular surgery position.

With Dr. F in Sacramento, we now have a top TOS doc in Northern CA, which is great! Nothing against Drs. Lee and Avery; it's just that she has a ton more experience with this tricky syndrome. Whatever problems people may have with her bedside manner (or lack thereof), Dr. Freischlag is an excellent surgeon by anyone's standard and she has earned this reputation, internationally, in an almost exclusively male world. The controversial world of TOS medicine that we all know and love!

Hi - I was on blood thinners for 3+ years after a large blood clot in my arm. It freaked me out for a while and then I just went about my life and didn't let it stress me out. Let's face it every time we drive our car on the road could be the end. Wear your medical id. If needed they can reverse the warfarin very quickly. Talk to some good docs and make decisions regarding the tos and treatment. Don't worry. You will still be able to enjoy your life and the things you love.

Kelly,
What he said was that to get to the surgery area he would need to lift/move nerves and doing that is similar to moving and repeatedly touching hot electrical wiring in your home. An electrician turns off the breakers before they work on the area yet there is no off switch for our already damaged nerves.
If we are at the point of searching out a TOS surgeon our nerves are a mess. They already send wrong signals all the time.

It does sound like patients like you who were made worse by surgery made him much more cautious.
I left my appointment feeling like a huge burden of am I losing my mind had been lifted but without a solution.

JPSF,

That's really interesting to hear, and troubling. Dr. Ellis, in Berkeley, has a theory that the nerves are "sick" and that they make the nerves nearby sick as well, which is why many of us experience TOS as progressive even though, technically, it's not supposed to be.

I had a high degree of confidence in Dr. Avery though I was skeptical of the surgery. I thought he was cautious, thorough, explained the difficulty of working in that area of the body and urged me to go into a different line of work since working as an attorney had caused or contributed to the problem in the first place. I didn't think he was wearing rose colored glasses about surgery. But it was hard to not try surgery when nothing else was working AND there was an 85% success rate.

I am still tempted to try re-do surgery because nothing else has worked and I would like there to be a solution. However, after 12 years of having my nerves going haywire, I'm not sure if surgery could ever work anyway. Dr. Avery said that vascular surgery was like unkinking a garden hose. Once you unkink it, it works fine. As for nerves, he said, "They can't take a joke."

I relate so to your statement that it's nice to not feel crazy, but there is no solution. I have felt that many times coming out of doctor's offices. I can't help but feel like surgery just isn't a good solution when it's success is so unpredictable. In any other profession, the powers that be would say, your approach just isn't good enough yet. I give Dr. Avery credit, at the very least, for being honest about the limitations of what he can offer. I hope you find something that will help you.

Take care,

Kelly

Since TOS isn't enough fun my son saw the pictures of Debbie Gibson 2 weeks ago all over the net. She came forward because she was getting bullied about her appearance and she wanted it known she had Lyme Disease.

I had a bite and a bulls-aye last January. It didn't really bother me but it was really ugly and lasted about 3 months. People would say you need to get that checked. I was 3 months post major shoulder surgery on the side I have major nerve damage and it was the least of my concerns.

It now explains why I have declined so rapidly. My pt's comment was that one evil or another but that this is better than my neck disintegrating and that was her concern. Lyme disease symptoms line up with TOS. It is another area where most doctors tell you nothing is wrong and insurance fights you every step of the way.

We thought getting a reason was going to be the light but looking at sites on the net make it clear it is as tough a battle as TOS. Crazy huh.

The other Bay Area doctor that is now listed for TOS is
Neil D Rudo
236 San Jose St
Salinas, Ca 93901
1-831-424-7389