Chronic Pain Support Group

I had that dx back in '86, had surgery, was only inpatient 2 days and fast recovery, very minor pain but have no idea how things are done these days:(
It's never come back either:)

Only problem I had was learning to swallow again because of where the incision was but that got resolved with therapy.

This is something a couple of docs have mentioned to me..
Immunolofist will likely further investigat, because I have a major artery out of place thatr may involve this..
From what I've read...the surgery is not often long.term successful...and is controversial..
Interesting that you brought this up..haven't heard it talked about off the TOS site..
I've had multiple dx's ( of course) for this area, including...Neuralgia from shingles ( without rash ).... thoracic RSD....cellulitis....

My immuno doc was the one who found I was born with the weird artery....you'de think two cardio docs would...right ?
Or the gastro who got the pics for my difficulty swallowing...right ?

CRAZY what can be missed by " specialists" when they're focused on the specifics of their choice.

Anyway..I'm interested...PM me if you want about your case/condition.

hugs...jc

well...there you go..
the other sixe of the coin...Mzrcie had good results from the surgery..

Ive had it 20 years, chronic somewat tollerable, last two years has become debilitating. Have hac nine injections in my back with no avail goin to see top tos surgeon in denver, of cours a month to get appt. Ill keep u posted xoxo michelle

I have the symptoms of it so my neuro sent me to a vascular surgeon. I think I spent almost an hour talking to him. He explained that he had done a residency specializing in this in Detroit 20 years ago. Apparently the heavy strain and repetition of car building causes this to happen.

He then went on to explain that he had only seen 2 cases in the next 20 years. He didn't think that a car accident or screwed up surgery could cause this. So he had a dopler study done and told me NOPE.

I don't know if I agree with his quick decision. But I guess unless I want to find another surgeon I have to live with it. I'd be curious to hear what your doc does to diagnosis TOS.

I'm ever so sorry, I left out a tidbit about the cause of mine...

I have a spare rib in my upper right rib cage, it was hard to spot, the x-ray techs missed it, the surgeon was who spotted it. Maybe because he was a thoracic surgeon he spotted what wasn't seen?

He told me it's not uncommon for women in particular to have that spare rib though it isn't the size of "normal" ones.

Mine is roughly an inch or so long....still have it, they just moved things around and cut a tendon that was compressing the artery.

I had tos and the surgery a year ago in August at an infamous "best hopsital in the us" and came out with something worse. The surgeon pulled too hard on my nerve roots and caused RSD (Reflex Sympathetic Syndrome) aka CRPS (complex regional pain syndrome). This was never in my "what to expect from TOS surgery pamphlet", had I known this huge complication, I would've second guessed having the surgery. Mine was caused from an extra rib (completely grown) on the right side, that was crushed from bulging disks in my neck. This disease is HORRENDOUS. The surgery itself was terrible, releasing me after only 1 day, and I complained every 3 weeks with worsening symptoms and no one listened to me until February. The surgeon said my case was the worst she ever performed on. I had to get it done though as I was losing function of my arm. However, now I have the same nerve pain, but worse, arm goes black if I stand too long--body is trying to reject it, and get these feelings like I am being burned with a cattle prod. So I jolt and jerk out of nowhere, thats fun when I'm in public. My skin always burns where the incision is on my neck from behind my middle ear to the middle of the chest, its so supersensitive I cannot where a shirt, have a hair touch it, and a gentle breeze like air conditioning in car sends me through the roof with pain. I cannot do any movement with right arm above elbow level. The scariest thing is I have a rib on the left side as well, not full grown. So I am careful about things that set my left symptoms off. Try doing PT before surgery. Do lots of stretching, water aerobics, whatever. I wouldn't do it again....EVER. Lost my job because of it and had every passion taken away as I am super limited to what I can do each day. Hope this helps if your still out there--be careful, get super duper educated, and find the right doctor. Cheers.

I had TOS back in December. It was caused by Myofacial Pain Syndrome. The TrPs had pulled my collarbone up so much it was pressing on the nerves and creating intense nerve pain down my arm and hand. I went to a myofacial release therapists and the problem was resolved.

Please try Myofascial release FIRST ! If your Scalene Muscles / Pec minor are clamping down ... it can be released ... very successful! No kidding!