I would highly second seeing Dr Togut. He was trained as a cardiothoracic surgeon, and developed such a heart for TOS patients that he essentially wrecked his surgical career. Hospital honchos wanted him doing big-bucks heart surgeries on wealthy citizens, the grateful type that are inclined to donate wings of buildings named after them. Dr Togut was spending his time on too many cash-strapped TOSers, and the surgery not only carries risks, a REAL cure, in terms of feeling just like before afterwards, is pretty rare. But Dr T saw there were plenty of Drs fixing hearts, and no one caring for us, and he carried right on doing the right thing as he saw it, God bless him!

The hospital found a bright young cardiologist to do things their way, and revoked Dr T's priveliges to make room for their new boy wonder. Thus, he
no longer practices surgery, but he is in practice seeing ONLY TOS patients, and his knowledge is just phenomenal! He has done over 1000 surgeries in his career, and can explain clearly the anatomy, and usually give a good idea of where your problem is, and what caused it. He spends 1 1/2 -2 hours or more on the initial appt, taking a detailed history, clinical and various testing, then sits down to explain his conclusions with you, and suggestions for treatment. He writes scrips, does triggerpoint injections and gives firm suggestion (read instructions!) for how to better manage your life with TOS.
He is very aware and honest about what a miserable condition TOS is, and the most compassionate Dr I have ever met.

For years he would spend one year a week in Denver working beside and observing Dr David Roos, the surgeon who introduced the modern trans-axillary approach rib resection, in order to try to duplicate the Vascular Institute's excellent post-op follow-up stats. He is also a colleague of Dr Schwartzman, a top neurologist in Philadelphia and Professor at Drexel University College of Medicine. Dr Schwartzman is a leading researcher in treatments for RSD, and the wait list to get into his program is 3 yrs or more. Because I have severe RSD, Dr T referred me to Dr Schwartzman, and that referral got me in to see him in about 3 months.

And even though Dr T did the surgery so long, he doesn't believe surgery is always the answer, or even usually, so he won't push you to have it, he very much believes it's a last resort option and it's your decision to come to.
I see him about once a year - I live in IL or it wd be more often!!

beth

Thank you all for your responses. I appreciate the time taken to reply (especially you other TOSers for whom I know that typing can be an uncomfortable task!!!). I have seen the stickie list and the multiple lists of docs on-line but I was (am) very much interested in hearing about the experiences folks have had with these docs specifically - good, bad or indifferent. That is extremely helpful for me as every time I go to see a doc and don't get any real help it makes it harder to put myself through it all again. Also, I recognize there can be some great docs out there who may or may not have been helpful to different patients so it is nice to hear about your experiences. I will take all of your suggestions/advice/experiences to heart. You've given me some hope which is what I really need right now! Again, thank you all so much!

Also, aproximately 1 year after surgery I was literally pain free. I was able to have my fourth child in 2002 with a completely normal pregnancy. I did schedule a c-section so I wouldn't aggrevate my neck.

I was completely pain free until March of last year. I drove my family from NJ to Disney almost completely by myself. The stress of the drive put me back into TOS hell. Dr. T. was not happy with me when I went to see him. The fact that I had been completely "cured" and did something so stupid by being so stressd was not a good thing.

We are driving to Disney again next month but I have learned my lesson and will make sure I have my husband help and my daughter has her license now so she can help. Also, little things like bringing a pillow to rest my arm on and stopping and changing drivers more often.

Best of luck to you. Having TOS does not have to be a life sentence as long as we pay attention to our doctors and our bodies.

Linda

Hi Linda,

Thank you for writing about your experience. Can you tell me - did Dr. Togut perform your surgery or did you have that done somewhere else? I really, really like the idea of surgery as a last option, but should I really need it, I do want to know that I would be dealing with an experienced and competent surgeon. It sounds like you have really had a fantastic experience with Dr. Togut. I've called his office today and had to leave a message - I hope they'll call back soon so I can make an appointment. He's 2 1/2 hours away but hopefully he will be well worth the trip! Driving can really aggravate the TOS so my boyfriend is going to drive me there and back (he's a real sweetheart!) - Shame on you for driving to FL all by yourself!!! I'm sure you'll bounce right back though! Best wishes to you!
Waggy

Please keep us posted on your visit to Dr. Togut.

I am hoping that through that visit you will get some new information that will be helpful, and that it will give you some hope for your own treatment plan.

We do care and welcome you to our little group!

Hi- I'm new here to the community but I felt like I had to reply. I have suffered with TOS/Bracial, cervical plexopathy x 15 years after an MVA.I am from South Jersey and will say that THE BEST Doc for TOS is Dr. Robert Schwartzman from Hahnamen University Hospital in Philadelphia, I have been to Dr. Togut once but decided not to have surgery at that time. My saving grace has been a top notch physical therapist in Medford NJ named Mark Butler he works with Novacare and specializes in TOS, Mark has made it possible to maintain the last 10 years. He is the best in his field and is referred by Dr. Scwartzman. I suffer from chest wall pain, epigastric pain, arm shoulder pain, weakness numbness, swelling, RSD, the works. It is a life long miserable injury. The above professionals have made it possible for me to survive this and really know what is causing my severe pain and disability.
Hope this helps some....