40+plus years of TOS
 

Since being a teenager, I have had problems raising my arms (shoulders it work out), or doing anything above my head. From being useless at netball at school, to blow drying my hair. My hands have always tingled and had a mottled look. After the usual tests in the UK, which all came back fine, I moved to Australia. About 20 years ago, I thought I would look into it again. Went through nerve induction tests, MRI's, etc. still no diagnosis and was sent to a neurologist who proceeded to tell me it was in my head, even though during the nerve induction test, the nurse told me I had no pulse when I raised my arms. In tears, I left the hospital and gave up again. Then 3 years ago, I started having Carpal Tunnel Symptoms and trigger finger/thumb too. I saw a plastic surgeon, who immediately jumped on the Carpal Tunnel and trigger finger (left little finger) & thumb (right) and I was operated on within 1 week for the right hand and 3 months for the left hand. The trigger on both fingers have been fine, but middle finger on right hand started triggering. I had a cortisone injection, but it still triggers. Since the operations, I can not bend my fingers of both hands in the morning, when first waking. They improve during the day, but are still very stiff and weak. My pincer grip is very bad and I cannot grip very well. On top of all this my hands and shoulders are exactly the same as they have always been. I have self diagnosed as having Neurogenic Thoracic Outlet Syndrome, which my plastic surgeon now seems to agree with. I have been seeing a great Physiotherapist, but we are getting nowhere fast, he has been trying lots of different approaches. Is there anyone on here that has the same symptoms as me. Not just TOS and/or CTS, but the hand problems since having CTS surgery? I am so over it and really don't want to enter my twilight years, already disadvantaged.

We have much helpful nfo on our TOS forum and the sticky threads there..
https://www.neurotalk.org/forum24/

It might be wise to find a vascular surgeon for a complete work up due to the losing pulse when hand are raised..
Have any xrays or MRIs been done, to check for bone anomalies or extra cervical ribs?
*You can copy your post here & also reply on the TOS forum if you want to make a thread there with additional information or questions.

No one has ever mentioned a vascular surgeon, thank you.
Yes had MRI's, X-rays, CT scans, etc. No extra ribs and blood flow was fine during MRI, even though arms were raised (though lying down and extremely painful).