My daughter was diagnosed with TOC by a well regarded TOC specialist. Today the TOC PT team leader sadly told us that PT will not help her. I'm very distressed.

My daughter landed in the ER in January with severe pain from her neck to her finger tips, tingling, swelling and blueness in her hand. After seeing a shoulder specialist several times and having 2 months of PT, she was finally diagnosed with TOC in March. The PT she was seeing suspected TOC and was treating her as if that is what she had. The shoulder specialist agreed TOC was likely and then we found the doc she has now.

She has both vascular and neurogenic TOC. Her doc believes it was caused by an injury about 18 months ago. That injury seemed to resolve but she has had increasingly severe and seemingly unrelated symptoms for the past year (mostly back and neck pain, the back pain being severe). Reaching up to hug a friend landed her in the ER in January. She was laid out on the floor from pain, her hand ballooned up, became numb and turned dark blue. This now happens to varying degrees on a daily basis. On the really bad days, she can't hold a pencil to take notes in class (and she's a great student). It's heartbreaking. The muscle relaxers and NSAID don't seem to help her at all.

We are going back to see her doc ASAP (appt is end of April but I'm going to try to move it closer). He was hoping conservative therapy would work but has already gone over the surgery with us. It's the full monty - removal of the 1st rib and the muscles. She is a tiny girl of 14, with a lot of growing left to do, and it just seems very radical for a growing body.

I've been doing additional research tonight and it's hard to find much on pediatric TOC. Are there any other non-surgical options that are successful in children? What about scalene steroid injections? Is there anything else? I want to go to the next appointment with some educated questions/suggestions so we can exhaust all non-surgical options.

I am not anxious to agree to surgery, and in fact will take her to another state to see a pediatric TOC specialist before I do that (considering a doc in Columbus, OH or another in Charlottesville, VA. We are in Louisville, KY). She has already said she will not agree to surgery, and I don't think I would force it on her even if I could. She'd have to be convinced it is what she needs, and quite frankly, so would I. But the option of living with this pain and limited use of her dominant hand and arm is just so very grim. She's so young and this is taking a huge toll on her both physically and emotionally. On me, too...

Thanks in advance for any information you can point me to, or any personal experiences you can share.