Intro
 

Been lurking on these forums for a while and wanted to post a brief intro.

I'm a software engineer in the Bay Area, USA. I was diagnosed with thoracic outlet syndrome last year 3 years after the initial symptoms began. After the diagnosis, I immediately started to trawl the internet looking for more and more information. While there's some amount of 'technical' information, this forum is one of the very few places with actual experiences and real people that have gone through multi-year battles. I've benefited a lot from many posts here, thanks everyone!

Most of my story is the same as many others here. When I started to feel pain and loss of strength in my right arm, I entered this cycle of medical visits that looks like:

1/ Find an ortho surgeon / chiropractor / physical therapist
2/ Get diagnosed with tendonitis / RSI / fibromyalgia / thoracic outlet syndrome
3/ Spend a couple of months doing the non-surgical treatment
4/ Give up and try to work through the pain instead
5/ After a few months of (4), go back to (1)

Current symptoms are: pain, loss of strength in right arm, pain in right neck, shoulder blade, hip. These increase when looking down or sitting for any non-trivial amount of time.


Right now, I am working with an Egoscue clinic and seeing slow but steady progress over the last 3 months.

Love your name. If they'd made crowe recite that in gladiator, the theater woulda erupted, lol.

BTW which egoscue exercises are you doing and which helped the most?

Current symptoms are: pain, loss of strength in right arm, pain in right neck, shoulder blade, hip. These increase when looking down or sitting for any non-trivial amount of time.

Ditto! my pain spikes when i look down. i wonder why!!

Hello Akash. I've been on a variety of Egoscue exercises, they change the set every couple of weeks when I visit them. By now, I don't think there's one "magic" exercise that will fix things.

To me, the pain spiking when looking down means that the position of the neck being bent forward is trapping nerves or placing more strain on muscles that weren't designed for them. In general, the head is pretty heavy and is meant to rest on the spine and thereby the legs. Pulling the head forward is now asking several neck and chest muscles to support the head. This is ok on a temporary basis but if we have a long term habit of doing this, nerves, muscles etc are taxed/irritated and will react quickly to even a few minutes of looking down. This is my understanding, anyway.

Hi, have you considered getting Ultrasound Guided Botox of the anterior and middle scalenes and also Pectoralis Minor Muscle(s)? I've had TOS for 13 years, and have now had surgery, but the botox injections were hands down the best non-surgical treatment. I live in Nebraska, and at one point considered flying to Boston every 4 months so that I could get these injections and continue working.

Hello, Eight! My physiatrist did try a botox injection for the scalenes (not sure which ones exactly) but it didn't have the effect he expected (not much relief), so we held off on doing more of those. Part of the reason may have been that we didn't get the right muscle. I also remember that insurance wasn't totally happy with these. Also, the scalenes are close to some important nerves (apparently) so I wasn't sure it could be a regular thing for every few months.

In your case, did you see immediate relief or was it after a couple of weeks?

Were they ultrasound guided? Also, I wonder how much skill level varies between people giving them.

Not that I've had them.

Do either of you have edema above the collarbone?

Hey dufusmaximus- keep digging, more shots. I have stumbles across a number of success stories from Bay Area doctors, so it may be a matter of time and perseverance.

Thanks, yeah, completely agree. From my experience so far, I am optimistic.

Hi, does anyone do Botox shots for the medial scalene in the Bay Area with ultrasound?