I had very bad TOS on both arms and had surgery years ago in Denver. I was doing well all this time with some left over numbness and color change in my RT arm. BUT so much better then before the surgery. I've been able to do many things I hadn't been able to do before TOS surgery. It was an amazing change to have my arms back.

I have had more blueness in my RT arm and swelling and pain. No more TOS was showing up and the doc was puzzled but kept looking for the cause. Always very thorough in check ups and running tests. This time the CT techs messed up my TOS CT and caught a part of the axillary area not often caught in the way I was lying down on the table and my doc was able to catch a rare cause of numbness, pain and color change in arms.

It's called Langer's Arch. Very rare but can cause all the same symptoms of TOS. I had surgery and right away my arm feels so much better.

If a doc doesn't find TOS then ask to check for this, it may be the cause of your symptoms. There isn't much written on it because it's rare.

It's a birth defect. You can have this and TOS at the same time like I had.

I've not "visited" this site for years as I have been doing so well after very successful TOS surgery. I will not respond to any posts. I like my private life and privacy of my doctors.

I just thought if there is a question of having TOS or NOT, ask about this.

I wish you all well in getting better with TOS or at least getting answers.

Have a wonderful holiday season.

http://www.ijav.org/2009/ijav_09_113-115.pdf
thought a picture might be helpful.....this case was unique as far as was kown at the time....

Thanks for this, I will check on it later when I have strength again.

Also, don't forget that when I was diagnosed with neuro TOS, I was also diagnosed with RSD, later a couple docs added fibromyalgia, and two docs were very certain that I had an immunological disease process going along with it, but it hadn't been "seen" yet...Dr. Brantigan said that there are 100s of immunological / neurological disease processes that have not even been discovered and named yet, let alone understood how they may work with TOS.

I have always felt that we can have more than "just" TOS.

With all of the pain / nerve medications we take, just like I "got" diabetes (which even though I stopped Cymbalta and Lyrica has not gone away, but requires oral medication), we must watch our blood tests and test our liver enzymes, anemia, osteoporosis, and one member got cancer at about the same time as she got the TOS diagnosis.

This member may not want me to point out her name - if she sees this, maybe give a shout out? Because this person was so brave, so courageous, and so positive while she lost her hair and underwent surgeries and chemo - and all what else - I am just in awe of her for BEATING cancer and now back fighting TOS.

So thanks to anyone who posts possible other conditions, or things to watch out for. Gracias!