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Surgery for thoracic outlet syndrome
Bones, Joints & Muscles | Last Active: 9 hours ago | Replies (18)Comment receiving replies
@jenniferhunter
PTs are afraid to work on me with CCI symptoms which has become more debilitating as it is progressing than TOS in 2024. Unfortunately, there are about 5 neurosurgeons in US who are familiar with CCI when it falls into the grey area of not so severe where you need c0-1/2 fusion right away. There is one Regenexx location, Centeno & Schultz Clinic, in Denver, CO that does bone marrow concentrate/PRP to address CCI issues due to ligament laxity (many from auto accidents/sports accidents/hEDS) using procedure called PICL (Percutaneous Implantation of the CCJ Ligaments) which I am waiting on in April 2025 as a non-invasive treatment next to fusion surgery unfortunately because my recent botox treatment ( Jan 2025) for cervical dystonia made my CCI so much worse that I need to wait for it to wear off (3 months) before PICL. I am seeing a visiting MFR lady who has worked on dura flow because my nervous system is so hyper being upright with CCI. I will ask her about pelvis treatment next time. There is no guarantee that PICL will work either since these treatments are individual based ( your stem cell count/system wide inflammation level/no injuries during the long months of healing, 3 to 6 months to a year) but some had success so that is my hope.
It's really unfortunate how unfamiliar medical population is from radiologists to neurosurgeons...wrt upper cervical issues...losing time/functionality while passed around so many consults. This has been just how it is for me. Hope you are well Jennifer.
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Thanks for the CCI information. Another malady I will have to investigate as it does explain a lot of my symptoms. However, my TOS is unmistakable. I may have both issues going on though. My right arm is so bad though that I can’t even search my phone for more than 15 seconds on the phone holder in my car without having to rest my arm. I am most likely going to get the surgery for TOS. I have pretty good hope that it will help my arm regain strength to be able to return to baseball. If it helps the brain fog and dizziness (which is way less frequent since I stopped throwing) that would be an added bonus. If it doesn’t, I will look into CCI. Here is my worst area of my cervical MRI report:
C5-6: The disc is degenerated with loss of height and T2 weighted signal. There is diffuse posterior protrusion with narrowing of the thecal sac but no mass effect upon the cord. The posterior facets are degenerated with narrowing of the neural foramina.
I definitely have a bulging disc here, but every doctor says it’s not serious enough for surgery or to cause most of my neurological symptoms. So I’m hoping it’s the TOS causing them, and the rib removal will solve the issue.