Been meaning to update on this. I feel like my thread should no longer be “East Coast” since I ‘ve been speaking to surgeons all over now. Anyhow, I have spoken to a few surgeons over the phone/e-mail in the past few days, including:

Dr. Niren Angle (Orange County, CA)
Dr. Jason Lee (Palo Alto, CA)
Dr. Robert Thompson (St. Louis, MO), actually only spoke to his Medical Assistant, Robert Fuller
Dr. Harold Urschel (Dallas, TX)
Dr. Hugh Gelabert (Los Angeles, CA)

I am waiting to hear from Dr. Charles Brantigan (waiting for response to e-mail, just got back from vacation) and Dr. Stephen Annest (on vacation until July 3) in Denver, CO sometime next week. Dr. Richard Sanders is also on vacation until July 9.

I also spoke with Dr. Julie Freishlag’s (Baltimore, MD) assistant and got some information, and the main reason I am not considering her is her availability (no consults until November). Also, she does not do phone consults, neither does Dr. Dean Donahue (Boston, MA). And while Boston is not that far for me to travel for an in-person consult, I have already decided I want to do my PT in CA and will be moving there for a month or two following surgery so I’d rather do surgery closer to CA than over here.

Ok, so I will go in the order I listed above with the surgeons I spoke with.

Dr. Angle called me directly from his cell after I left a message with his office and faxed over my paperwork. I explained my symptoms, history and asked my questions and spoke with him for at least a half hour. He also told me to call back anytime if I had any more questions. Very few doctors do this, and I liked that alone because it means he is easily reachable and available for post-surgery recovery (which will evidently be lengthy). This factor is also important to me since I am going to be doing surgery out of state. So here are all the answers to the questions I asked him:
-10-11 years experience, has done 75 to 100 TOS surgeries to date
-could not tell me his success rate for nTOS because he says he is very selective with those cases and was unsure, but he said he has no recurrent cases
-Trained at UCLA
-Transaxillary approach (his preference for this is because you get 2 incisions the supraclavicular approach, he said if you have the experience, the approach is not more difficult)
-would completely remove the cervical and first ribs, and a partial scalenectomy with the anterior and median scalenes, and neurolysis of the brachial plexus (which he said less than 5% of patients need)
-said nTOS patients do not get complete relief as often because there is usually a lot of trauma involved and other diagnoses like fibromyalgia
-said I have classic identifiable symptoms, 90% of the diagnosis is made by the clinical exam, but would have me do an MRI venogram (one last test)
-3 to 6 months before operating on the other side
-has not seen anyone with Pec minor syndrome and feels the diagnosis is “questionable”
-surgery would be 2 hours, would be hospitalized for 1 to 2 nights, off work for at least 4 weeks, physical therapy begins 4 to 6 weeks after
Overall, I really liked Dr. Angle. He was very easy to talk to, kind and understanding, and definitely very experienced and knowledgeable.

Dr. Lee: When I called his office, they had me fax over my test results. I called to follow up a couple days after, and his assistant said Dr. Lee said I am a surgical candidate and would like to schedule an appointment. I asked if there is a way I can speak to Dr. Lee before flying out to see him. I was given his e-mail. I e-mailed over a description on my history and symptoms and my list of questions. He responded very quickly (couple hours) and answered every one of my questions and he also attached a very recent (December 2011) article he published about the success rate on nTOS cases, which was great (over 80%).
-He said because I have c-ribs, my success rate would be even higher
-He said my c-rib + symptoms are enough confirmation for a TOS diagnosis and does not need any further testing
-Thinks pec minor is seen only when rib resection doesn’t work
-Does Supraclavicular approach, and says he has never done it any other way as his reasoning behind this
-Said he has never re-operated one someone
-Wait 3 to 4 months before operating on other side
-Hospitalized overnight, home in 1 week (as in traveling back if I were to go back to NY), back to work/school within 2 weeks, range of motion exercises for 1 month, rehab is over 2 to 3 months

It’s interesting to see how much the surgeons differ in their opinions over the same case. I found it interesting that he said I would be back to work in only 2 weeks considering I do 95% computer work (which I e-mailed back to explain). He is also the only one who thinks PT should begin right after the operation rather than waiting a couple weeks for the nerves to heal. He also said there is no TOS specific PT although when I told him I would be doing PT in CA, he said it would be at Edgelow’s practice. The approach (supraclavicular vs transaxillary) is also something I am still deciding between so I am not sure how much that will factor into my decision just yet. Other than that, I liked that he responded quick as well (I e-mailed him back twice and he responded within 5 minutes following the initial e-mail). However, I would still like to talk to him over the phone if I decided he was a top choice, because I am concerned with him sending me back to work too early, where I can easily re-injure myself by repetitive strain, and also with his sending me to PT so quick. He said I could schedule my surgery with him and it would be a Tuesday. I was thinking, without a consult or physical exam??? So I asked and he said I would consult Monday prior to the surgery. I just feel like he is a little too quick with everything (the only good thing would be the responses).

Ok need a typing break, will post about the rest later tonight or tomorrow