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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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12-03-2012, 07:42 PM | #1 | ||
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Has anyone ever gone to the Cleveland Clinic for there RSD ? I was told the doc's there are very good for treating RSD.
I have had RSD in my right hand and arm for 2yrs. |
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12-04-2012, 11:00 AM | #2 | ||
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If you are in Ohio, or near Ohio, there is a Facebook group for RSDers. Lots of good info on doctors etc. several people, including myself, have been to various doctors at Clev. Clinic.
If you contact the RSDSA, Jim can give you the info on joining the FB group. It is nearly 3 hours drive one way for me, and it is to painful and difficult for me, so I have stopped going. I am hoping to find someone closer to me. The Occupational Therapy department was great to work with. The only place I have gone where they did not make me worse, and actually improved my range of motion. |
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"Thanks for this!" says: | Tedd (12-14-2012) |
12-04-2012, 12:58 PM | #3 | ||
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I can only speak for my experience but mine was a nightmare. I just would not attend the 4 week pain program as for me it was not just worthless the doctors everyday tried to humiliat me or make me feel like this is all in the head. Even the patient that were there with just back pain the doctors told them it was in the head and if they stopped thinking of it, it would vanish. Then during group talking when the doctor would ask for us to share, people would talk about things that scared them and stuff and the one doctor that ran it would sit there rolling his eyes about the topics.
I did see Dr Hicks who was good. if you do go there make sure to go to a pain specialists as I was first sent to the neurologists and they believe RSD is a made up disease to get medecine. Iam sure out of the whole institute there are good doctors, its just like anywhere some are good doctors and some are nightmares. Niki |
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"Thanks for this!" says: | Tedd (12-14-2012) |
12-04-2012, 01:58 PM | #4 | ||
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Niki - I think you are right. There are good and bad doctors at each hospital/clinic.
I've heard that Dr. Hayek (sp??) is very good there, and does ketamine infusions. I've not seen him, but I'd like to. |
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"Thanks for this!" says: | Tedd (12-14-2012) |
12-06-2012, 07:49 PM | #5 | ||
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Hey my doctor wanted to put me into the Cleveland Clinic for my RSD in my right leg and foot. However I heard it was a total nightmare and that they just treat rsd as any other nerve damage issue, and that they push you through the pain. Which as we all know, is TERRIBLE. So I got put into the pain clinic at a branch of Akron Childrens Hospital. Now I don't know your age, I am only 17 so it works for me, but if you are close to my age you would be accepted. I would recommend it very much. Not just the therapy, Ot and PT, but they actually treat the people well and know there is an extent to the work we can do.
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"Thanks for this!" says: | Tedd (12-14-2012) |
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