Anyone been seen and treated by Dr. Robert Thompson of WUSTL at Barnes Jewish, St. Louis?[/B]
I have an appointment with him coming up in June 2012.
I am a bilateral Arterial TOS patient. Only scalenectomies done in 2002(right)and 2010(left) both by same vascular surgeon. My right is still doing good, but having issues with the left side. After 10 months post surgery symptoms started developing again. Left pects very tight. Symptoms come and go with change in posture and position.I might be neural too on the left side, I am thinking...

Curious to know if anyone has seen him?

When I first started exploring surgical options, his website was easily my best source of information early on - http://surgery.wustl.edu/tos/TOS.aspx

I was convinced I needed to travel to Denver to see Sanders and St. Louis to see Thompson and had actually started making plans (only to find out Sanders had retired). Charles Brantigan was next on my hit list. Eventually I learned that there was sufficient expertise in my area that I did not need to travel. I suspect the same for you in the Bay Area. There is value to being local to your surgeon in my opinion.

Call DR. wladislaw ellis and ask him who he would recommend to do sx. He may know of one. I know there was someone in the bay area that people on another board used to talk about.
I saw a Dr. Jeffrey Ballard in Orange, ca who offered to remove my rib and was trained by the Dr. in the bay area that I am referring to (just can't remember his name).

I you want to go to Dr. Thompson, I have heard good things about him by others. He has done sx on pro baseball players. I actually called him before my surgery and he called me back. Seemed like a good guy. I'm sure he's a good surgeon.

The main doc at ucsf was Dr. RJ Storey but he has retired. Dr. Ellis would know who if anyone has take over. Also there may be a good doc at Stanford. Also Dr, Kai Johanson in Seattle is supposed to be good. Dr. Thompson is one of the leading surgeons in the country and head of the TOS consortium if you want to travel.

Who did your fist sutgery?

Thanks so much for your input, I have already been to Dr.Jason Lee at Stanford. He sent me to Peter Edgelow who in turn sent me to my vascular surgeon in India who had done my first scalenectomy for ATOS on my right side which is still doing great. After post surgery symptoms I went to see a vascular surgeon Michael Conte at UCSF who in turn sent me again to Peter Edgelow. I couldn't progress more than the basic core program with Peter as I would go into pain with his progression exercises, I still do his core program twice a day and it gives me some relief, but Peter is severely ill now and doesn't practice anymore and I cannot communicate with him anymore.

I think I will also take up the advice on calling Dr.Ellis and see what he has to say.

Thanks for your suggestion, I was just on Dr. Wladislaw Ellis's website today and my gut was telling me that maybe I should contact him, maybe he can throw some light on what is going on with me post surgery and suggest some one.
I know he gives Heparin injections for pain management. Anyone been given those?

TOStrojan , Did you actually get to talk to Dr. Thompson? Can one just ask to speak to him?

I have sent my reports and my Timeline and symptoms. I am wondering who I can ask to review them, before I make my visit. They have made me an appointment to see Dr. Thompson, one for Physical therapy and one with an anesthesiologist/pain mgt Doctor.
I feel it is important for them to see my all of my reports and treatment so they can decide whether I need any other testing so I can plan for it in terms of the days I need to be there. I do have family in St. Louis, so travelling there is not so much of an issue.

I am curious about them. I think he is one of the only dr's doing them.Dr. Jordan says it is outdated and that botox is the more accepted and proven method. the literature does endorse botox, I havent seen anything written about heparin except by dr. Ellis.

In my case the botox did not work for any length of time so I would be interested also if anyone has tried the heparin and also in possibly taking a trip up to the bay area to see him and whoever took over for Dr. Edgelow. Do you know how to order the Edgelow Protocol?

Dr. Ellis also wrote an article with Dr. Stoney about the value of scalenectomy without Rib Resection. I would definately go see him if you are in the bay area.

It was several years ago, but I do recall speaking to him on the phone.

About Dr. Ellis: he believes that TOS is caused by abnormal neuroinflammation. The nerves are sensitive and are easily irritated ---- much more so than ordinary nerves. This hypersensitivity and neuroinflammation (NI) are the source of the pain and problems. I am not a spokesman for him though, so hearing his views from the source is best.

He used to use heparin to decrease NI, but now is trying EPO (erythropoeitin) to decrease NI.

Nospam posted that his Dr. felt that NI and edema were the problem. I'm glad to hear that he believes that. Other people have various degrees of nerve compression/irritation and even lesions, but they don't experience pain or muscle spasms.

Our nerves are overreacting and sending out inflammatory cytokines and other things that cause increased edema and inflammation in the area. Things like TNFa and IL-1 are overactive. That's why I use pentoxifylline because it combats TNFa and other inflammatory things the nerve is spitting out.