Paget-Schoetter (Venous) and Neurogenic TOS
 

Hello all,

I am desperately trying to find someone who has a similar type of condition as I do since I have been unable to get treatment. I had Paget-Schoetter syndrome (venous TOS) 5 years ago and ended up having my first rib removed and vein replacement. Last year, I began having a lot of strange symptoms and, after going to John Hopkins, was diagnosed with Neurogenic TOS; however, my condition is backwards. Normally, with NTOS vein compression occurs when the arms is raised, but for me, it is opposite. When my arm is down in normal position the vein is compressed and opens when I lift my arm. Due to this, I have absolutely no idea what exercises I could do or what treatment is available. I have done physical therapy for months with no improvement and I've had the botox injection which made things significantly worse. I was told this was very unusual as well and because of that, surgery was taken off the table. I now have pain every day and have no idea what to do about it. I spend hours researching, but have been unable to find another case like mine. If anyone has information for me, it would be greatly appreciated.

I'm confused..
NTOS is mainly a nerve compression issue, not a vein compression, that would be another version of VTOS....
Some can have both VTOS & NTOS & pec minor syndrome also...

Imaging, other testing, plus a knowledgeable PT or DR should be able to do an comprehensive evaluation and confirm if NTOS or VTOS or Pec minor some mix of any or all...
Also if internal scarring might be the problem..

A few in the past posted about internal scar tissue after surgery, that might be something for you to investigate..
The scar tissue will adhere to the veins , nerves and fascia causing many issues and pain..

Was your rib completely removed or was a stump left behind?
That can be a problem also..

You can use our site search on those topics, but it has been many years since members posted about some of them. So they may or may not be located due to the system limitations.... If that is the case a web search might find similar topics..
https://www.neurotalk.org/search.php

I strongly suggest only seeing expert & advanced therapists, as poor or incorrect therapy can make you much worse off..



Our many sticky threads have a lot of info on best PT suggestions..

Thank you for your reply. I have had lots of testing done. Ultrasound imaging showed the compression and release which was when John Hopkins (which specialize in TOS) said it was neurogenic. I also had an xray while there to confirm if any of the 1st rib was remaining and there was found to be "residual rib" remaining. What the doctor explained was that she wanted to remove the rest of the rib and scalene, but since the botox went horribly, she said this was no longer a good option since the botox was essentially a dry run for how the surgery would impact me. When I had paget schroetter, my surgeon was amazed at how much scar tissue was present which actually led to the inability to find the clot for hours. I have literally had every single test done in the last year and a half. What I've experienced is this continuous passing my case off to the next specialist because no one can explain why this is happening or what I'm supposed to do. I experience swelling, numbness, and daily pain.