Hello...I'm new to this board but thought I might jump in on this TOS discussion. To clarify and answer some of the older posts, TOS is a compression of the brachial plexus, the bundle of nerves that leads down from the neck and into the arm and diaphragm. The plexus can be compressed by scarring in the scalene muscles on the side of the neck, or by an "extra" cervical rib, or scarred or damaged in other ways. It is sometimes called brachial plexopathy, also. There are a wide variety of symptoms...mine include numbness in my hand and face, pain and swelling above my collar bone, pain under my arm and in my shoulder blade, neck pain and spasms along with headaches...my fingers also like to curl up, and my hand is weak and reflexes are diminished. I do have some bulging discs in my neck, as well, following an MVA four years ago that started all of this, so it is hard to tell what is strictly TOS and what is disc related. The reason for the referral to Colorado is because some of the best TOS docs in the country are in Denver (I happen to live here!). Dr. Brantigan and Dr. Annest are two names I have come across, although I have never met them. I was referred to Dr. Sanders, though, who literally "wrote the book" on TOS many years ago; his practice is exclusively TOS surgery. (I think he's been doing it longer than 5-6 years, but I'm not sure exactly how long.) He is very kind, keeps very strict statistics on his patients so he knows his success/failure rate. He gave me a 60/40 chance of improvement with surgery...for me he would only do a scalenectomy, as I don't have any rib involvement. I've never heard of "cracking the chest" when they do TOS surgery; I do know the rib removal is a lot more complicated than just the scalenectomy. I have heard of some people who have benefited from it greatly, especially if there is involvement of the veins and/or arteries in the area. I know Dr. Sanders does a lot of phone consults; although I opted against the surgery for now, he called me a few weeks after I saw him to check on me. In the meantime I saw a neurosurgeon, and we decided to try to fix the discs first and see if it would calm down the TOS as well, and Dr. Sanders is in full agreement with that. TOS surgery is definitely not a "cure", and I would agree that it should NOT be rushed in to by any means. I've heard of people who have gotten worse from it, and there is a risk for developing RSD because of the amount of work they have to do around the nerves, although TOS itself seems to raise the risk of RSD automatically, even without surgery. There are ways to try to keep from flaring things up and I know of people that have managed it with meds, some various kinds of PT (NOT strengthening exercises, that only makes it worse), activity modifications, etc. It's an individual thing, but I know that typing or other fine motor uses of my hand, overhead activities, driving long distances, or forward or side-to-side movements of my arm cause me flares pretty consistently. Well, I guess that's enough typing! Hope this can help someone...take care! Donna
I also was just diagnosed with TOS last month. I've been in terrible pain for 7 months. It took several doctor visits lots of tests, mri, xrays & bone scans which all came up negative. Out of desperation I finally flew to Denver and saw Dr Brantigan. I finally got a diagnosis. He did a 3d catscan which shows vein & artery compression. I am currently doing Phys therapy 2 times a week to see if we can get this calmed down. I also have shoulder impingement and cervical disc degeneration. I'm a 46 year old hairstylist. Rather busty. If I have to have surgery I will definitely quit working ( only working 2 days a week now). I am currently on cymbalta 60mg 2 x a day, prevacid, soma (muscle relaxer) ,vicodin as needed, xanax as needed for anxiety all this has caused me. I see a neurologist, a phsiatrist, and a physical therapist. I will definitely go back to Denver if surgery is needed as Dr Brantigan does surgery only as a last resort. And because of that his success rate is around 90% of giving improvement. The vascular surgeon in columbus Ohio where I live do not do this surgery very often and can only give me a 40-60% improvement. Hope this info helps someone. DO NOT LET JUST ANYONE REMOVE YOUR RIBS!
Here are my symptoms
Shoulder pain, forearm pain, my ulnar nerve has been numb since feb this year, trapezius muscles tight, scalene muscles tight, first 2 ribs on my right side are elevated, ribssore on right side, armpit numb, pulse dimishes when arms are elevated.
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