Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


advertisement
Reply
 
Thread Tools Display Modes
Old 06-04-2020, 10:21 AM #1
lminsavage lminsavage is offline
Newly Joined
 
Join Date: Jun 2020
Posts: 3
3 yr Member
lminsavage lminsavage is offline
Newly Joined
 
Join Date: Jun 2020
Posts: 3
3 yr Member
Exclamation 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.
lminsavage is offline   Reply With QuoteReply With Quote

advertisement
Old 06-04-2020, 06:35 PM #2
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default

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..
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 06-04-2020, 08:10 PM #3
lminsavage lminsavage is offline
Newly Joined
 
Join Date: Jun 2020
Posts: 3
3 yr Member
lminsavage lminsavage is offline
Newly Joined
 
Join Date: Jun 2020
Posts: 3
3 yr Member
Default

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.
lminsavage is offline   Reply With QuoteReply With Quote
Reply

Tags
neurogenic, paget-schoetter, tos, treatment, vein

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Paget-Schroetter Syndrome CarenAnne Thoracic Outlet Syndrome 0 11-08-2018 08:48 AM
Paget-Schroetter Syndrome --> First Rib Resection --> ? Smuts Thoracic Outlet Syndrome 21 08-20-2015 05:55 PM
Paget Schroetter Syndrome Experience Emilina Thoracic Outlet Syndrome 9 04-25-2015 03:42 PM
? About Paget-Schroetter Syndrome onelessrib Thoracic Outlet Syndrome 3 02-24-2014 01:46 AM
Paget Schroetter in 31 year old firefighter AngelinaD80 Thoracic Outlet Syndrome 2 01-15-2012 03:50 PM


All times are GMT -5. The time now is 08:49 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.