Thoracic Outlet Syndrome Support Group
Thoracic outlet syndrome (TOS) consists of a group of distinct disorders that affect the nerves in the brachial plexus (nerves that pass into the arms from the neck) and various nerves and blood vessels between the base of the neck and armpit.
I am fourteen and I have been living with neurogenic TOS for two years. I used to swim competitively and one day my arms just froze above me. For about ten seconds I couldn't feel my arms at all or move them. When I moved them they were pale and there was pins and needles going down my arm. Since then I have developed extreme pain and tightness in my shoulders. I have done over a year of physical therapy. I have had three MRI/ MRAs, multiple ultrasounds, EKGs, EMGs, and seen multiple surgeons and specialists. Currently I get steroid injections and go to PT twice a week and still have no relief. I understand that it is a difficult surgery and recovery and it might not work but I am starting to feel hopeless. Does anyone relate and have any treatment options that worked for them? Any coping strategies ( my therapist doesn't get it)?
As you have already found out, the doctors only want to try to treat symptoms and don't really care how much it hurts mainly because they don't feel it's life threatening. The biggest thing you have to tell the doctors is that this is causing you issue living a quality of life that I should be living, it's stopping you from living a normal life and that you need to have it fixed.
You may have to go to Cleveland Clinic, Mayo Clinic someplace like that to get real help. Most local and area medical facilities only know how to treat symptoms not fix problems
It's been three years since I had surgery to where they did not remove rib one, just made enough free space to let the nerves move around. I am now having problems again, worse than the first time. One of the nurses found studies that this can come back on many people which is what has happen to me. I am in the process again of trying to find a doctor that will help because the doctor that did my surgery moved way to far away from where I live to go back to him..
Keep your head up, talk with your parents and really explain to them that your quality of life is really an issue and you need to be seen by a specialist that actually deals with NTOS.
I hope you're feeling better. If not, have you tried trigger point injections or dry needling? Particularly of the scalenes, SCM, and trapezius muscles.