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

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.

Tos
 

How can I find the edgelow protocol online? I've been looking for it but cannot find it.

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****************