Dear Sue,

Ever since I've had TOS (5 1/2 years now) I have NEVER been able to tolerate any physical therapy. Every time it just caused pain. It got to the point that the very reputable PT that I was seeing basically said they are only comfortable waving their hands over me...and feared just touching me. I was able to get in some lymph nodes drainage massage - that is where they have a specific path they move their fingers lightly and slowly across the head, neck and upper bod. If you haven't had it, check around as it is good I think to help avoid RSD / CRPS from starting in.

I now can have very, very light soft massage. But if the person goes a little too hard, then I will have heightened pain about 5 hours later, up to a week longer.

If you can do the Butler self care but do it lighter, it is so beneficial if you can somehow keep up some level of PT. Don't forget that you can also get by mail Edgelow (up in Berkeley, on our doc list) PT system, that is very highly recommended and has helped many people here.

I am really sorry you've developed TOS, and as is true for so many of us, (musicians, people who love arts and crafts, etc.), it's just so sad that it takes away what we love most, and for many of us, our careers, such as mine, that I loved.

So anyways, do the best you can, try to remain positive, and if you haven't seen one of our top docs about surgery yet, in all of the TOSers I've met, every single one has benefited to some degree (that's the key) by their rib removal and scalenectomy.

God bless.