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.

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.