Parbie: Great detailed write-up of your experiences. Thank you for sharing.

I'm from the Bay Area and was a patient with Edgelow for probably over a year. During this time. I was referred to 2 Vascular Surgeons - Dr. Lee and Dr. Avery.

During my journey, I was never referred to Dr. Schneider who was at UCSF at the time. From several sources, I got the impression he was not as conservative as his peers and suggested surgery for most of his patients.

My first stop was Dr. Lee. I had a doppler test done and met with him for only a short period of time as he was running late (2 hours). He touched my collarbone area a little and described the surgery procedure he would perform on me. I do not have any vascular symptoms, only neuro. I asked him on a scale from 1-10 (10 being the worse) to rate my doppler results. He gave them a 3 and suggested I could schedule surgery on my way out. I told him I wasn't interested in surgery based upon the test results and he said, "When I get the courage, I could schedule." I should also mention I have no deficiencies in grip strength, muscle wasting or anything visibly deteriorating from neuro compression. I did not walk, but ran from the office.

My second stop was Dr. Avery. I had to have the Werden MRI to see him and had that completed for his review. Along with the MRI results, he ran me through the usual Roos, Adson, looked for bruits, etc. testing. He suggested no scalene blocks or any other invasive diagnostic testing. Based upon the results of my MRI, I would be a "surgical candidate" due to the lack of costclavicular space on both sides, but told me to "do everything under the sun to avoid surgery." He spent about 2 hours with me and told me he thought he'd never see me on a surgery table.

As you stated, it's disconcerting to have such a diversity of opinion by surgeons who treat TOS.

You can surely try the Edgelow Protocol, but I think one month is a ridiculous short period of time to see if it will work for you. Without someone to guide you through the "exercises," it can be easy to be do them incorrectly on your own. I had the guidance of Edgelow and I was still messing up at times. I did not make progress with the protocol, but I still do bits and pieces of it daily as it helps me along with intense manual therapy 2x's per week.

Best of luck on your quest!

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).

Thanks for the feedback and for sharing your experiences Anne. I understand why you believe one month is a short time, but for me, I think even a few sessions of any type of PT is indicative of whether it is helpful at all. If I feel it is helping me, not short-term where I feel better for a few hours and then the pain comes back, but I can actually tell a difference (even a small one), then I will continue it for longer and postpone surgery. Hopefully, with the help of Edgelow even by a distance, I can do the exercises correctly.

I chose not to contact Dr. Avery based on a few bad experiences by other patients. I would rather go to a surgeon who has had no malpractice cases or extremely bad outcomes than risk it with someone who has had more than one. Your experience with Dr. Lee confirms my instincts about him, after my e-mail correspondence with him. He seems to be too quick and ready to cut, without considering the specifics of each patient's history/symptoms.

If I was considering Dr. Schneider before, I am definitely not anymore (regardless of the fact that I don't plan to have surgery in NY). I called his office almost 2 weeks ago to ask him about Edgelow's protocol which he recommended I try and I had another question. I was told to e-mail him which I did. Still no response. If he is this unavailable prior to surgery, I don't even want to imagine how it would be post surgery. Plus, he said he would only remove the first rib if necessary and I want it out along with my c-rib to reduce chance of recurrence. Makes my decision all that easier. Too bad they won't all be so easy.

All great inf0- I sent you a private e-mail with some more articles. I have a friend whose mother had ATOS and surgery with Dr. Urshel. She loved him,but she still has some neurogenic symptoms and was considering botox injections. She has since had some blood clot issues near her heart. but I dont know if it is related to the TOS.She had some problems with him and medicaid for payments post surgery but she still speaks very highly of him.I think the surgery was about a year ago. I haven't talked to her since her last issue,because she is still revcovering and I dont know her well.

Great research.

I would add that while Dr. Gelabert is very caring and thorough, he is very busy with his teaching and relies on an assistant. He wanted me to have a repeat scalene block and SSEP test and said his assistant would handle scheduling (he gave me a copy of the referral he typed up for her). When I hadn't heard back after 2 weeks I called her and she stated she was waiting on dictation from him(?). I ended up faxing my copy of the order directly to the neurologist so they could inquire with his office as to the holdup. It was another 2 weeks before someone called me to schedule an appointment for testing. I can't imagine trying to deal with Gelabert's office long distance like you may be. I just didn't have the patience and other doctors didn't believe repeating the scalene block and performing SSEP was necessary in my case.

I think that a return to work after only 2 weeks is simply ridiculous. 3 months is much more realistic.

Reachability was a huge factor in my surgeon selection. After finding Dr. Angle, I did not find it necessary to travel for surgery.

My surgeries with Dr. Angle were closer to 3 hours as they required neurolysis. However, I am a pretty sturdy guy and my recovery has been pretty fast. I only had 5 weeks between surgeries and only spent 24 hours in the hospital post-op each time.

In your position, I would definitely give the Denver guys a close look (I had planned to see Brantigan before choosing Angle). Urschel appears to be promising as well.

That is very useful information, Marc, thanks. It definitely seems like Gelabert is not very easy to get a hold of, and I followed your thread, you had noted before that the UCLA system is very slow-moving. I am going to give his office one last call, but am not expecting too much. I had the same experience, the other surgeons I spoke with don't believe those tests are necessary for me. I don't think I will be able to deal with the system either especially being long distance.


Yes, I definitely am hoping to speak with the Denver Drs next week. Hopefully I will have a decision made by the end of the week. I also need to find out whether Urschel does still operate or if he just oversees.

Did Angle completely remove 2 of your scalene muscles or cut and move them up? I am trying to figure out which is better in terms of reducing recurrence. I could have sworn I read somewhere that it is better to remove them, but can't find the source where I might have read that.

You can't completely remove the median scalene muscle because the long thoracic nerve runs through it.

I'm sorry Limoges but I think you are mistaken. To my knowledge and from what I have found on the Internet, the scalene muscle can indeed be completely removed. The operation involves locating and securing the relevant blood vessels and nerves before resecting the ligaments and the scalene muscle. The surgeon simply locates the nerves in the operation field and holds them out of the way throughout the procedure.

As you would know, many surgeons advocate removal of the first rib combined with removal of the scalene muscle, although some apparently advocate removal of the muscle alone.

" We completely detach the anterior scalene muscle from the first rib as well as from the subclavian vein, artery, and attachments to the fascia beneath the subclavian artery, vein and brachial plexus...."
http://www.vascularinstitute.com/page19.htm

Even Wikipedia has a piece about it:
"Surgical approaches have also been used successfully in TOS. In cases where the first rib is compressing a vein, artery, or the nerve bundle, the first rib and scalene muscles and any compressive fibrous tissue can be removed..."

References:
http://www.vascularinstitute.com/page19.htm
http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome
http://ats.ctsnetjournals.org/cgi/co...full/75/4/1091
http://www.momentummedia.com/article...backobrien.htm
http://www.sharecare.com/question/remove-rib-surgery
http://www.surgery.ucla.edu/vascular...Syndrome.shtml


The following book describes the surgical procedure in full anatomical detail.

The Ischemic Extremity: New Findings and Treatment
By Heron E. Rodriguez, William H. Pearce, James S. T. Yao
http://books.google.com.au/books?id=...emoved&f=false

If you read carefully, you'll see that I said the *medial* scalene muscle cannot be fully removed. I've had the anterior scalene muscle removed myself, so yes, this is possible, and it's helped me tremendously.