I tried to find them but all I do is get into sites where they are trying to sell their books. I actually had to turn my computer off to get out of their website. Couldn't exit.

This is for a friend that I am trying to help. I know one is in Arizona and I can't think where the other two are.

Have any of you had luck there. I was honest with this friend. I have talked to many people who went there and had no luck but I thought it might be a place she could go for help.

Thanks for the help.

Ada

Dear Ada -

The main site of the Mayo Clinic is located at 200 1st Street, S.W. Rochester, Minn. 55905. Their primary website is www.mayoclinic.org although for some reason, I'm having trouble getting connected right now.

There are also major centers in Scottsdale AZ and Jacksonville Fla., along with a host of smaller feeder clinics in the upper Midwest and a facility in one of the Persian Gulf States, Dubia if memory serves.

If your friend is planning on traveling anyway, s/he might as well go to to Rochester, but probably on or with the referral of a treating physician. (It's not required but it's certainly advisable.)

Mike

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I will send this on to her so she can check them out.

I was wondering if anyone on here has been to any and if they did you any good.

I have talked to several people that said they didn't do a thing for them. One was a 70 year old man that had the TOS and RSD. He said he spend a lot of money at the one in Arizona for nothing.

I know of someone that use to be on the TOS forum that they did her son more harm then good in Minn.

I was also told by the one in Minn that you have to have a diagnoses for them to even treat you. I didn't understand that.

Any good reports?

Thanks again Jo and Mike.

Ada

Ada,
I have been to Rochester MN when I lived in NW Iowa. BUT I was not there for RSD. I went due to dry eyes due to Sjogren's Syndrome. I had not been DX'ed with SJogren's at that time but that happened in 8/03. I hated the treatment I had to have for it but I was treated with courtesy & with professionalism. I had to spend the night & go back to have the eye surgery checked the next morning so I stayed in a motel & received the hospital rate. My daughter went with me to drive home. No way could I drive home. I was in too much pain with my eye patched.

DebbyV

I just called MN and they had no literature or anything to offer. My doctor says they have an interdisciplinary approach.

Of all of the people in Rochester, I found the best group for RSD in the Mayo Clinic to be in the Department of Physical Medicine. Their website (which is down at the minute) is http://www.mayoclinic.org/physicalme...t/doctors.html. The guy I saw, Keith A. Bengtson, M.D., runs a hand clinic there, but seemed to know as much about RSD as anyone I met at the Mayo Clinic (including an uber-specialist/peripheral neurologist, but I won't go into that). If you can be seen by the Department of Physical Medicine, perhaps on the referral of your current treating physician, I would go for it.

I have somewhat less confidence in the the Mayo Clinic's pain mangt. program, where it has a long history of teaching patients with chronic pain how to basically grin and bear it. They're real hawks on the use of long term opioiods and should in my opinion be avoided, certainly as a point of entry into system. If you get referred to them for an in-patient ketamine infusion, that's fine, but it's not where you want to have you intial consult.

Mike

P.S. With reference to my subsequent post, Dr. Bengtson is not the Mayo Clinic doctor who screwed me up the first time I was seen for RSD. I saw Dr. Bengtson on a subsequent and much happier visit. Nevertheless, the cautions set forth below would probably apply to whoever you are seeing there. I just happen to like Dr. Bengtson as a person.

It's Just Me,

I think it I went to a MAYO Pain Doc. I would ask him if he thought someone should bite a bullet going into OR. Hugs, Roz

One huge word of caution: the Mayo Clinic is a large organization and in order to assure that the same patient seeing any one of many doctors would - in theory - get the same diagnosis, has apparently adopted some fairly rigid standards under which a clinical diagnosis of RSD can be made. (At least that's one explanation.)

As a result, if you are not presenting with a "classic" case, e.g. differential tempratures, redness, sweating, swelling etc., they may not make a finding of RSD, even though your home town pain doctor has already managed to get you great relief with sympathetic blocks. That screwed me up with my disability carrier for a couple of years until my symptoms progressed to the point that (1) Robert J. Schwartzman, MD saw me in Philadelphia and produced a very detailed report saying that I in fact had RSD and (2) I went back to the Mayo Clinic where I was seen by someone outside of the whole pain treatment network and he was able to make a diagnosis of RSD, along with the things I was seeing him for, and that ended the discussion.

So, if there are any issues of public or private disability coverage and your RSD has "unique" aspects, I would give it a second thought before going to the Mayo Clinic.

Put it another way, all things considered, you might want to be in Philadelphia.

Mike

I sent this info on to my friend. She is just very desperate for help and we are looking for any we can find for her.

Mike, Like you I have seen 3 hand surgeons and they were up on RSD more then any Drs. I have ever seen. The first one I saw was the best I had seen but he has left this area. I have one in Denver and one in the Springs and they are excellent.

I've said on here a lot of times about PM DRs. I have not seen a good one around here or heard of one. This ENT that is going to put the VNS in me knows more about RSD then the PM Drs.

I just donot get it.

Ada