My journey started when I was very young. I was always very flexible. As I grew older, my joints, primarily my wrists, became increasingly unstable and painful, There was also some numbness and tingling in my pinky and ring fingers. I had VERY tight shoulders and neck muscles; I had spasms in trapezius areas on both sides.
By the time I was 15 years old I was already being shuffled to different doctors for x-rays, EMG's and physical exams. They all ruled out Carpal Tunnel, Ulnar Tunnel, Ehlers Danlos Syndromes, pinched nerves and the list goes on. I missed a lot of school due to the pain and was making weekly visits to my Chiropractor and Primary Care Doctor. Then, after High School, I really tried to not ever talk about it with my friends and family. I can't tell you how many times I would hear that I looked fine or that I was faking and I've fooled all the doctors. I knew I wasn't crazy! The pain I felt was real, they just hadn't figured out what it was yet. For about 6 or 7 years the pain was manageable with ibuprofen. I made some adjustments like not opening tight jars or carrying things that were too heavy.
Then, it seemed out of the blue, I got what felt like an electricity jolt down my left arm that didn't let up for several weeks. They tried different inflammatory, nerve, and pain medication with no real success. My Primary Care Doctor then restarted the shuffle back to the Orthopedic Surgeon. After dozens of x-rays, he shuffled me to a Physiatrist for an EMG who then sent me to a Medical Center with Physical Therapists that specialize in Thoracic Outlet Syndrome. He explained a little about what it was and told me to search on the internet for more information. This sounded like what I had but I still had one more appointment before the diagnosis would be confirmed.
They did a lengthy physical exam, confirmed the TOS diagnosis and started me on their TOS Physical Therapy Program (2x per week for 8-12 weeks). Progress was very slow going but after about 6 weeks I started to notice I wasn't in the constant, intense pain and I didn't need as much pain medication. Once I completed the Program. I needed to continue doing the stretches I was given to maintain myself and the pain level.
Then in early 2008 I again needed more pain medication to get through the day and the numbness and tingling had returned with a vengeance. By the end of 2008 I made an appointment to see Dr Toivonen at the Hand and Upper Extremity Center, which is where I had previously received PT. My TOS symptoms were significantly worse than they were in 2006 and I now also have Pec Minor Syndrome added to the mix.
I'm back in their TOS PT Program. I'm at 8 weeks of PT and so far I've only noticed my migraines are only coming about every 2 weeks but the pain, numbness and tingling is still quite bad. Dr Toivonen doesn't do any TOS surgeries; he has referred me to a Vascular Surgeon at UW Hospital in Madison, although I've made it very clear that I'm not agreeing to any surgery right now. I want to know what options are available should PT yield no results and my daily pain reach the point I can no longer function.
I have come to terms with the fact that there is no "cure" for TOS and that I will need to continue to make adjustments to better function through the day. I can't imagine the day that I may be no long able to work or drive my truck but I've learned not to fight what my body needs. Now that I have found ATOSA, I'm no longer struggling through this alone. We are all at different stages and we can learn so much from one another if we are just open to hear it. Change is not bad, it's just different and that's ok!