Thank your for responding.

We are now seeing a wonderful ped. nuerologist who is actually looking for the reason he is in so much pain. Have MRI scheduled, pain mgmt (anesthesiologist specializing in RSD) and pain mgmt - holistic set up.

This doctor does not think he has RSD due to it being in the back. Thinks its muscle related so therefore the MRI with contrast. When see pain mgmt dr on rsd - will get more info. .

Started physical therapy today. Starting as easy as possible - had him in pool and rest of this day has been in tons of pain - but he did it.

Just exhausted over here with so many dr visits. But lots happier than being with the Cleveland Clinic where we felt like we were just passed around and nothing being accomplished. Nothing against CC - but very frustrated with them.

Happy Holidays!!

I am interested in what your doctor thought it was, or how he treated it since it was "only" in his back. I also have severe symptoms which are located at the bottom of my coccyx/near rectum, and I have not seen it described that way, except as an extension from involvement in an extremity. I appreciate any help you can. Thanks.

I am interested in the PT and desensitization treatments that were recommended. Can you direct me to where they could be found?

Crunchberry,
Dontcha get a lot of opinions here?

The problem I have, and i've been through lots of all kind of doctors, and therapies, since I've had this since '83.
You can do a lot of this work by phone.
(the Cleveland institute does btw, have a great reputation).

My point is, a Pain management doc, isn't as knowledgeable as a Neurologist, who deals with RSD regularly.
And, if you use PM, it should be a Psychiatrist!
Not just someone who pokes your son with needles.

So many kind folks have told you what works for them, I'm telling you what has worked for me.

You are obviously a Blessing to your son, for looking for all options.

The reason I say Psychiatrist for pain management, is because their training is so deep.
Same for the Neurologist, but, be careful with neurologist, some, can be "doctors who didn't want to get dirty", which is fine, so long as they keep their nose in the books, and that means everyday!
(I saw mine two days ago, and he read at least 50 pages / day).
And, he's not a youngster.
He was at the cutting edge with Dr Schwartzman, in Philly.

God Bless you both!

Pete
asb