Continuing my last post…

I spoke to Dr. Thompson’s medical assistant as his secretary said he was too busy for phone consults. His assistant was very knowledgeable as he works very closely with Dr. Thompson on every case. He said their protocol (just like I read in another thread about Dr. Thompson) is to usually send a patient to PT locally, following the instructions of their own PT for 4 to 6 weeks, and they request the patient be off of work during this time. He said they don’t always follow this course of PT depending on the severity of the patient’s symptoms and need for surgical intervention. They always order a diagnostic pec minor and scalene muscle block, if its positive it helps to figure out the source but if its negative, it tells “us nothing”. For my case, he said my c-ribs more likely support the diagnosis and called it a “fast track diagnosis”. He called their treatment and care the “most efficacious”. He also noted there is no “cure” for TOS, and there always a potential for flares and recurrence. Pretty much, I would have to fly out to see Dr. Thompson before they could really determine the need for surgery or whether I should try the PT for 4 to 6 weeks. This sounded more reasonable than the doctors who were ready to schedule my surgery without seeing me, but I cancelled out Dr. Thompson for 2 reasons: Missouri is too far from me whether I choose to recover in NY or CA and the main reason being the posts I’ve read about his bad aftercare. I don’t want to risk not being able to get in touch when I need to, and being pushed off to his nurse or assistant post-recovery, especially considering the distance. I am sure he is a GREAT surgeon and is clearly very experienced but I know myself and what kind of doctor-patient relationship I need especially after a serious surgery, so that was enough of a reason to take him out of my list of potential surgeons.

Dr. Urschel’s assistant had me e-mail my symptoms/history and later had me fax over my test results. In an e-mail, he asked me 3 questions, my age, the date I was injured, the size of my c-ribs, and my profession. After I responded, I got a phone call at work from him and we spoke for nearly an hour. One thing I thought about and now need to find out following our convo is whether he still operates. He made it sound as if he does, but considering the fact that he is 82 years old, and he kept saying “we” when describing the surgery and procedures, I am now unsure whether he only oversees or actually still operates. Something I found interesting is, that Dr. Urschel is extremely experienced, however he is not part of the TOS consortium nor did he even ask me which surgeons I have previously spoken with. It seems he has a completely separate approach to this. This may be because he is older than all the doctors who are part of the consortium.
Anyway, here is the info I got from him:
-has done, using the word “we”, over 20,000 surgeries to date with >95% success rate, “virtually” no recurrence in his patients
-travels all over the world to do TOS surgeries, just got back from Israel
-one factor to him indicating surgical intervention is having symptoms for over 6 months, so to him because I have been dealing with it for over a year, it indicates surgery although he would of course need to evaluate me in person to confirm
-he said my computer work has and is continuing to aggravate my symptoms (I definitely agree with this) and due to the nature of my work, I would not be returning to work for 3 months following surgery unless I am on very limited computer work (not possible at my job)
-he said he would order a nerve conduction velocity (NCV) test and this along with the physical exam is usually what he does to confirm a TOS diagnosis, he also does the EMG test but said if it’s too painful for me to repeat it, he wouldn’t do it (I was in extreme pain the last time I did it)
-does not use the scalene muscle block
-he said he would see if the pec minor is compressed during surgery, however said 99% don’t have any compression, very rare
-Surgery-transaxillary approach, remove full cervical and first ribs and any bands connecting from the cervical rib to first rib, cut and move up the anterior scalene and medius scalene muscles into the neck and neurolysis of the brachial plexus and c6, c7, t1 nerve roots
-hospitalized 2 nights, 3 months to heal, PT at home, raising the arm 180 degrees in the morning and night for 3 months, said there is no formal PT needed

He told me a story of how he got TOS himself in his college years and how his interest in it developed (the story is also on his website). Ended the convo by telling me I would need to come see him for a full exam and if he believes I need surgery, he would do it in the next day or 2, and to take my time and think about it. My concerns about him: the fact that he doesn’t believe PT is necessary post surgery which is the complete opposite opinion of every other surgeon I’ve spoken with and experiences I have read on this forum-if I were to do surgery with him, I would still do formal PT; not sure whether he would be the one operating; and that he does not remove the scalene muscles, rather he only cuts and moves them up into the neck

Dr. Gelabert: I did not get a chance to really speak with him or ask him all my questions as his response to my e-mail was that I might be better off seeing Dr. Freishlag since she is closer to NY. He said he would order a scalene block and SSEP to confirm the diagnosis. I responded and re-explained my reasons for looking at surgeons on the west coast and asked that he read my history as I think he missed all this info in my first e-mail, still waiting for a response. I plan to call his office tomorrow to follow up.

I have been doing a ton of thinking throughout the past couple of weeks, trying to narrow down my search, even created a spreadsheet and pros/cons list. So far, I like the level of experience Dr. Urschel has and feel he is very thorough and although he would do surgery right after seeing me, I don’t think he just jumps into surgery without being absolutely sure it is the right path. In fact, doing the surgery after the full exam instead of having me fly in twice to see him works out better, convenience wise. I would need to get some more answers to the questions I had listed above before deciding to go with him. I also really liked Dr. Angle, and although he is less experienced (especially in comparison to Dr. Urschel), he does achieve great outcomes and I had no other concerns with him. I don’t think I would go with Dr. Lee. He would be the most convenient for me as I plan to recover in the bay area, but convenience is not one of my top deciding factors for such a major surgery. I just did not feel comfortable overall, especially since he was ready to schedule the surgery before he even spoke with me.

I am still hoping to speak with Dr.’s Annest, Brantigan, and Gelabert, and then will be making my decision. In the meantime, I have ordered Edgelow’s protocol and will be starting that as soon as it arrives with the help of Edgelow himself (spoke with him over the phone and he said he would help me through it through phone/e-mail the best he can since there are no PT’s with experience here).