Could you tell me if there are any Drs. in PA, NJ or DE that you would highly reccomend in working with RSD? TIA!

Dear Vanessa -

The best RSD group in the country (outside of Boston, perhaps) is in Philadelphia. Dr. Schwartzman can take years to get into see. However, I understand from Roz on our board that Dr. Maleki is wonderful, and can be seen in far less time. For your reference, I saw Dr. Schwartzman now almost three years ago - flying in all the way from California - he had me hospitalized for a week on one treatment that didn't work, but he had to run before putting me into ketamine trials. Unfortunately, because of some other medical conditions that developed, I was unable to participate in the ketamine therapies.

If you are in their geographic area, I think it will be a big plus in being seen, especially in a primary treating capacity, which is what you want. Anyhow, here's their address:

Robert J. Schwartzman, M.D.
Jahangir Maleki, M.D.
Department of Neurology,
Drexel University College of Medicine
Drexel Neurological Associates
219 No. Broad Street, 7th Floor
Philadelphia PA 19107-1519
215-762-7090
215-762-3161 (fax)

Good luck!

Mike

___
P.S. Last I checked, the person you have to speak to in setting appointments, at least with Dr. Schwartzman, is Carol, who has absolute control over the scheduling calendar.

Hi Hon,
I remember you saying you are young. If I recall rightly you haven't had it that long as well. Make sure you share this information with them while trying to get an appointment. It could help.

I have seened Maleki MD who is wonderful. Hugs, Roz

Unfortunately, I am too young to be seen by Dr. S./ their group. That is who I had really wanted to see but we contacted their office and I am not able to see them there. I am not 18 yet, so that possibility is out for now. Maybe somewhere down the road I can see him, if I am still dealing with this.


Thank you for the replies.

I must say that I found Boston to claim to have the best, but in actuallity I would choose to differ on that opinion!

Just had to add my 2 cents about this one,
Peace,
Lisa

Who do you feel is the best Dr. for RSD? Just wondering what your opinion is on that...

I saw Dr. Getson once -he was working ala Dr Schwartzman with the ketamine but his funding was cut- He was very nice and down to earth-here is the links to read about him..

Debbie

http://aolsearch.aol.com/aol/search?...ry=dr%20getson

I have a GREAT doc that i see if you are willing to come up to NY!!! He even had RSD himself so he knows exaclty what we are talking about!!

Let me know if you want his name and everythng!


Amber

The top int he field is Dr.Schwartman. HE is retired, but does do some work in Hannaman yet. It can take years to see him, nut he trains his staff welll, even interns from Psych dept on rotation I observed him demostrate RSD and TOS for them to see even if the test show nothing the pain in not in their head and this is how you test, or reproduce to establish the problem.

He is cutting edge on Ketomine and lidocain IV, I think that was what they used. My daughter did not have the treatments but I met many that came to Phila to be treated.

Did you treat with Dr. Togut, if so he has a sonsultation ability with Dr. S to get his patients of need seen.
You amy be too young to be treated with Ketamine protocol, but not to see Dr.S. He saw my dauther and she was just turning 18.
I would consult with Dr.Togut and see what he suggest and strings he can pull for Dr.S to Consult your situation.

I am not sure but call there is it universtiy of PA on 15th, Center city exit, onto Broad st, second left there is parking near the hospital, office is across the street.

Another one you may want to call or email is Dr. Scott Fried OF THE UPPER EXTREMITY INSTITUTE, blue bell, PA www.nervepain.com
Opps sorry for caps, lap top......
Been down this road with my daughter since she was 16, she will be 30 in a few months.

Di

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,
Lisa