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Originally Posted by Anne4tos
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!
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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.