[Scaredsilly]

Parbie I believe was the person to recommend I make an appointment with Dr. Schneider (since I can't see denver doctors anytime soon) and I took their advice and made an appointment. I am very worried with what I'm going to did out. I have only vascular symptoms and have been convinced I have ToS. I recently spoke to my cousin was is a patient of an amazing doctor in NYC named Dr. Sen who saved his life. Has anyone heard of him? My cousin had a very similar thing as TOS but it was worse apparently. In his spine an artery was being compressed and when he turned his head to the left he would almost pass out.

Im freaking out now bc all this time I think I have ToS but maybe I have what he had. He almost died from surgery and scar tissue and Dr. sen did another surgery and saved his life and fixed his very rare problem. I researched dr. Sen on Internet and don't see anything about TOs but my cousin says that is what they thought he had.

Anyway... I'm starting to wonder if I have something worse than TOS or this dr. Schneider won't be able to truly find out what's wrong with me. Has anyone gone to speak to him or have surgery from him? What did you learn from him? How is his bed side manner? I realize he isn't as experienced as dr. Brantlgan but when I called the office the secretary said he deals with TOS all the time. I was thinking of getting the diagnosis from Dr. Schneider and hopefully taking test results to Denver for surgery. I am so worried about getting a stroke or blood clot but I am also worried about being worse off after surgery with scar tissue.

Can anyone message me privately who has been dished with arterial or venous toS? I need to speak to someone who knows how I feel. My thoughts about having something sitting on a vein is overwhelming and is effecting my quality of life bc of how scared I am. Is this normal to feel this way? Did you feel this way when you were diagnosed?

[parbie]

IMO seeing Dr Schneider wouldn't hurt since he is your closest option right now. The more opinions you get the more questions you can get answered. I only saw him once and did not feel he was as easy to talk to as I wanted and he also had his medical resident do a lot of my assessment to start with but he also did the same stuff afterward. He recommended surgery but said I could try TOS specific PT if I wanted so I chose to do that. When I called and emailed to get in touch with him after my appt for a q he never got back to me. So this in combination with me finding other surgeons, although out of state, with more experience led me to Denver to see Drs Sanders and Annest.

I think you should see him just to be properly assessed by an experienced surgeon and hopefully get some answers. He did not have me do any testing as I had a lot done before going to see him. But if you see Brantigan he will have you do more tests anyway because he has specific tests he wants done by specific people in Denver. I just had the MAC test and scalene block as well as a repeat EMG done and I am glad I did because my results came back different than when I first did the EMG. However I have neurogenic TOS not venous or arterial. Hope this helps.

I have not heard of Dr Sen but it might be a good idea to also see him if you believe you might have something other than TOS.