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


advertisement
Reply
 
Thread Tools Display Modes
Old 09-29-2022, 05:48 AM #1
MisterK MisterK is offline
New Member
 
Join Date: Mar 2021
Posts: 5
1 yr Member
MisterK MisterK is offline
New Member
 
Join Date: Mar 2021
Posts: 5
1 yr Member
Default Advice for severe TOS

Hi, hope you are ok.

Want to tell you a bit of my story and ask for your advice.

I developed mild unilateral nTOS in middle 2020 because of a scapular dyskinesis (gym Injury) . After being undiagnosed for half a year, in 2021 one PT made my nTOS really bad after doing bad pec and neck soft tissue work which led to the TOS diagnosis.

I tried the entire 2021 to get better and didnt find answers where I live.

Found the Edgelow protocol and it helped a ton, stayed asymptomatic as long as I kept doing the basics. Bad thing is that I did too much of floor breathing and developed bedsores so I had to stop.

After that I freaked out because I was getting some symptoms in the other side.

I stopped moving altogether for a few weeks.

That was the worst choice, I developed purple arm, wasting of muscles from shoulder to hand along with a frozen shoulder.

When I finally came out of the fear and realized my new situation, I started trying to improve, but it has been hard. I contacted PT expert in TOS from the US who has helped a bit.

I had an Ultrasound done to check if I had blood clots because of purple arm, they found nothing.

I have improved the frozen shoulder a lot and some muscle mass has returned, but it has been 5 months and the atrophy of the muscles like in the hand and the abnormal position of the shoulder makes me think of nerve damage and severe TOS which makes me think I have to get surgery.

I have been searching for expert in TOS surgeries in my country but I only found a group of vascular surgeons that do the surgery aproximately 25 times a year, but I havent seen a good result.

I talked to one of the surgeons, he was very rude and didnt know so much about TOS specifics.

Should I try getting injections and keep on conservative or risk it all and go for surgery with less experienced TOS surgeon because of severe TOS (muscle atrophy)?

Any advice/ideas will be appreciated

Thanks
MisterK is offline   Reply With QuoteReply With Quote

advertisement
Old 10-01-2022, 07:26 PM #2
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,515
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,515
My Mood: Advice for severe TOS
15 yr Member
Default

Any MRIs? Or x rays?
Those check for extra cervical ribs or any other anomalies like larger bones than usual.
Vascular doppler test?
Doppler Ultrasound Test: Why It'''s Done, Risks, What to Expect

With an abnormal shoulder position/injury I might consider looking for a very good chiropractor or body worker.. Read reviews and ask around to find the really good ones..

Check out our useful sticky threads or use our search tool.
__________________
NT helpful FAQs -
.

NT Search -
.

These forums are for mutual support and information sharing only. The forums are 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.
Jomar is offline   Reply With QuoteReply With Quote
Old 10-03-2022, 11:44 AM #3
fvillarde fvillarde is offline
Newly Joined
 
Join Date: Oct 2022
Posts: 2
fvillarde fvillarde is offline
Newly Joined
 
Join Date: Oct 2022
Posts: 2
Default Tos

How can I find the edgelow protocol online? I've been looking for it but cannot find it.
fvillarde is offline   Reply With QuoteReply With Quote
Old 10-10-2022, 11:36 AM #4
MisterK MisterK is offline
New Member
 
Join Date: Mar 2021
Posts: 5
1 yr Member
MisterK MisterK is offline
New Member
 
Join Date: Mar 2021
Posts: 5
1 yr Member
Default

I have MRIs of neck and shoulder, X-ray of shoulder and chest CT. None of them found any abnormality.

Vascular doppler test performed in early 2021 found compression of axillary vein with provocative maneuvers, no other findings.

Vascular doppler test performed in early 2022 (purple arm) didnt found a thing, although because of the frozen shoulder we were not able to get to extreme positions, just to arms slightly overhead.

I've been in many chiropractors and PTs, they do not know about TOS where I live, or worse, they think they know and make things worse. Any tip to find a good one?

Edgelow protocol can be found in SPringer 2013 TOS book written by Peter Edgelow.
A new version written by his disciple, Steve Talajkowski can be found****************
MisterK is offline   Reply With QuoteReply With Quote
Reply

Tags
found, severe, shoulder, surgery, tos

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
severe rls SB1947 New Member Introductions 3 01-27-2014 09:20 PM
Severe Thoracic Pain - Any advice appreciated. Louise40 Spinal Disorders & Back Pain 2 07-25-2013 08:28 PM
Severe TBI Vrie Traumatic Brain Injury and Post Concussion Syndrome 6 05-05-2013 11:11 PM
Severe Neuropathy/Severe b12 defficency problems chick5899 Peripheral Neuropathy 7 05-28-2012 05:54 PM
I need severe help hurtsobad73 General Health Conditions & Rare Disorders 18 01-24-2008 09:52 PM


All times are GMT -5. The time now is 03:11 PM.

Powered by vBulletin • Copyright ©2000 - 2023, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2023 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.