Originally Posted by Vanessa
Who do you feel is the best Dr. for RSD?
Just wondering what your opinion is on that...
This is a very difficult question and I wish I knew the answer but I don't but I do have very strong opinions on this topic.
My opinion is that the doctor who takes your pain away is the best one but it sometimes takes visiting 5,10,20 doctors before you find the one who figures out "your" very specific issues.
The way I went about researching doctors was asking on forums like this and then researching on the internet and calling the office to see if they treated me like a human being. I wanted a doctor who had seen tons of patients with similar symptoms. Not just a few here and there amungst others. A real specialist.
Back in 2001, Dr. Daniel Carr was one of the "big RSD" doctors. He was teaching at Tufts in Boston and seeing patients a few days a week. I was unable to get an appointment scheduled with him for something like 6 months so me and another woman who had RSD, went to his office and cried to the secretary to get us in sooner. It worked and we both were seen on the same day so we could drive in together!
Once I became his patient, he gave it his all to try different things to help me. He truly cared about me and my pain. The problem was that he was treating my pain and not trying to figure out the CAUSE of it and ask whether or not it was fixable. He thought it was a classic case of RSD and I had all the symptoms. My left leg was 86 degrees and looked like crap. There was no way to not see that. He had seen this hundreds of thousands of times before and was an "EXPERT" on RSD so how could he be wrong?
I guess the lesson to be learned is that since he was so familiar with RSD that was what he was looking for. Each specialist sees the world thru their particular angle. What I really needed was someone to look at the big picture. See the forest, not the trees. My warning is that sometimes it's really not what they think it is.
Physiatrists are supposed to do this. Look at all the systems and figure it all out. Rehab doctors are supposed to find you recovery. That's what I searched for - complete recovery and I wasn't going to stop looking until I found it. Pain doctors only treat the pain not look for the cause or the cure.
In regards to particular doctors, for me, the doctor who saved my life is my chiropractor, Dr. Michael Miller, but Dr. Joan Borg-Stein was the 1st one to think I had entraped nerves that were fixable not RSD. Dr. Carr did everything he could to take away my pain but he didn't know how.
The other doctors I had seen for opinions I would not recommend to you. They are some of Boston's Best and I'd be glad to share names with you in private but don't want to bad-mouth anyone who may be helping someone else who reads this. Just because they didn't help me, doesn't mean they won't help you. We are all so different.
I had spoken the Dr. Schwartzman's office when the Ketamine coma's first came out and tried to get Dr. Carr to do it to me here in Boston. However, I did use a Ketamine compounding cream and Dr. Schwartzman spoke to Dr. Carr about how to use it with me. They are collegues and all the RSD doctors know eachother.
That's another problem, all the docs know eachother so they won't disagree with their buddies. It's the old boy network.
Sorry about being so long winded. I guess I have alot to say on this subject since it took me so long and so many doctors giving the wrong advise and treatment and I don't want you to go thru that.
Peace and hope,