I think my experience with Thoracic Outlet Syndrome is probably very similar to many other people's. I can't tell you the exact date it all started, but it was roughly about 10 years ago.
It was the year 2000, and I was working at a veterinary clinic, and trying to get into Vet School. I worked as a Veterinary Technician, and my job required a lot of physical arm strength to hold and pick up cats and dogs. I also went to the gym about 5 days a week to keep myself physically and mentally strong.
During my workouts I started to notice that my left arm could not keep up with my right arm. My left arm would start to shake and fatigue 2-3 reps into any exercise I was doing. Also, as my right arm muscles developed and defined, my left arm muscles remained small and undefined. In addition, my hand started to tingle frequently. It was frustrating, but I really did not think to much about it...
Then in the summer of 2002 I started getting awful headaches pretty much everyday. I ended up seeing a neurologist who tested me for everything from Hypothyroidism to Multiple Sclerosis. Just the possibilty of having MS was extremely scary for me, so I was relieved when all the tests basically came back normal.
The neurologists decided I suffered from Migraine Headaches, and prescribed medication that was minimally helpful. Meanwhile, I stated having deep aching pain over my shoulder blade that kept me up at night. Thinking I had somehow hurt my shoulder working out, I saw an orthpedic surgeon. His diangosis was Rotator Cuff and Biceps Tendonitis. I started physical therapy to "strengthen" these muscles.
Therapy made things much worse! Six weeks in, my therapist and I decided to stop. I went back to the orthopedic surgeon for imaging. He ordered an x-ray, and determined that everything looked normal. He was baffled, so was I. I got a copy of my x-ray to see someone else. I was also scheduled for a follow-up with the neurologist.
When I got the x-ray, radiology report explained, "...an elongated transverse process of C-7 may be responsible for symptoms..." Since it had to do with my neck, I took the report with me to the neurologist, who definitively said, "Oh, you have Thoracic Outlet Syndrome. You basically just have to live with it.", and that was that.
I had never heard of TOS, so I looked online, and sure enough my symptoms fit the description. Still, I had no idea what to do, so I lived with it.
My mother had seen an osteopath for her back, and had explained my situation to him. He suggested I schedule an appointment so he could evaluate me. He wanted to make sure it was TOS, so he ordered MRIs of my cervical spine and of my shoulder to rule out pathology there. The MRIs were normal. His advice: more physical therapy, but with a different therapist. So, I followed his advice.
This time the therapy was really focused on gentle stretching f the chest area using a foam roller, and strengthening the back muscles so my posture was less forward. It made sense to me...the shoulder is forward, so it is compressing the nerves...pull the shoulder back and the compressions should be relieved. I belived this theory for 2 years or more. I spent a lot of time and money trying to make this theory work. It didn't.
It was probably 2007 and I had decided that I needed to get used to constant pain, headaches, tingling, numbness, and fatigue in my left neck, shoulder, arm, and hand. I had stopped working out any part of my upper body, including the back strengthening I had been doing for 3 years. Eventually, I had accepted that this was just part of my life, and I lived with it. I was always and active healthy person, and I tried to stay active with hiking, running, ice skating, and skiing...just nothing that too hard on my upper body.
In early 2008 I went skiiing and was run into by another skier (my boyfriend--he still feels horrible about it). I suffered pretty bad whiplash, but after a few weeks my neck spasming had pretty much subsided. But, all my TOS symptoms had flared up with a vengance. My neck hurt pretty much every minute of every day--also causing headaches; my chest, shoulder, left back muscles, and my left arm and hand ached all the time, with brief moments of relief.
Since I had hurt my neck, I saw a chiropractor. Traction seemed to help with the neck pain and headaches, but the other symptoms remained unchanged--A familar story.
Again, I stopped treatment due to financial strain and little relief , and again I decided to just stay positive and live with it. It was more difficult this time though. My hand became much weaker than I had remembered. I couldn't open any jar on my own, and I dropped things all the time. The final straw was when I saw that the muscles around my thumb were visibly atrophied. I was afraid that things would only get worse, and I was only 33 years old.
I started my internet searching again. I stumbled across a one-page website written by Dr. Richard Sanders. In his writing, he seemed positive and practical about treating TOS. I called the next day to schedule an appointment. Knowing that he was considered one of the best TOS doctors in the country, I figured it would take months before I could see him. To my surprise, I was scheduled that same week.
Dr. Sanders is probably in his 80s. He is very tall, and has a very gentle demeanor that makes you feel immediately comfortable. Dr. Sanders asked me questions and we talked for about an hour, then he did about 7 different nerve tests, and then he gave me a pectoralis minor block. The injection was quite painful, but tolerable. Within about 20 seconds, I felt this amazing ability to move my left shoulder back. I can't remeber the last time it moved so freely. He proceeded with Scalene block. Again, within about 20 seconds, I felt a relief of tightness, and the aching was going away. He told me the injections would last about 40 minutes, but I wished they would last forever.
After confirming the diagnosis of both Thoracic Outlet Syndrome and Pectoralis Minor Syndrome, he recommended physical theray again, explaining that surgery is the last resort. I totally agreed, everything I had read about surgery was that it risky and had a low percentage of success.
This time therapy was very strict. No strengthening, no bands or weights. My therapist (who I would like to name, but I need to ask her first) is exclusively recommended by Dr. Sanders. She used Feldenkrais techniques, and dry needling to help relax the tight muscles.
I felt so good after a session, but within a day I was back to "normal." After about 12 weeks, my therapist thought surgery would be a good option for me, even if they could just do the pec. minor release. So, I went back to see Dr. Sanders.
Again, Dr. Sanders spent almost 2 hours with me--about 8 times as long as any other doctor I had seen. He explained that having just the pec. minor release would not alleviate my symptoms. He took time asking how I felt about surgery, and explaining how things would go. I forgot to mention, Dr. Sanders had retired from surgery the year prior, but that he works with Dr. Annest who has been doing this surgery for 25 years. He also assured be that he would be there himself to assist Dr. Annest and to "hold my hand."
They scheduled me for surgery with Dr. Stephen Annest on December 9th 2010.
I had a million questions, most of which I forgot during my appointment with Dr. Annest, and most of which could only be answered by going through the experience myself.
