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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Old 01-28-2015, 07:51 PM #1
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My wife has type 2 crps. We have been told by our most recent Dr. That is a pain medicine anesthesiologist That my wife needs to get treatment and soon this was back in October. He wanted to see her every 2 weeks and that happened once then it was 4 weeks then they canceled 3 different appointments all while my wife is in pain. Although she has medications none seem to do a whole lot when the pain shoots through the roof.

Im hear to ask for suggestions to specialist at large clinics so she can get strategic and focused care. we dont want the see me in two weeks BS we want care NOW from someplace that knows this disease and will get the care that people with this disease deserves. Her whole issue started over a year ago and just when we think we get somewhere these offices and Drs forget about us.

any suggestions on clevland clinic or hospital for special surgery. My wife is 33 and we have a 4 year old this is not how her years with her son should be... in pain.
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Old 01-28-2015, 08:02 PM #2
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I am so sorry for you and your family....especially your wife. I wish I could give you better news...my experiences are that the wait is norm. Continue to be supportive....
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Old 01-28-2015, 08:47 PM #3
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Hello,

So sorry for what you're going through. It is so challenging and frightening. I have questions for you - did your wife have much work up so they know it is type 2 CRPS not a nerve entrapment or something else that may have a "mechanical" cause and potential treatment? Is she on any meds? Does she have a good PCP who is willing to step in with steroids, neurontin, TCAs or other things until she gets in somewhere? Where are you located?

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Old 01-29-2015, 03:55 PM #4
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What state are you in that will help in finding the doctors you need
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Old 01-30-2015, 03:54 PM #5
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Originally Posted by alaska49 View Post
What state are you in that will help in finding the doctors you need
Sorry for not getting back. We live in Michigan, we are currently looking into Cleveland Clinic. Any suggestions would be great.
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Old 01-30-2015, 04:56 PM #6
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Cleveland would be good. It'd be great if you find an academic center you can drive to in a reasonable period. I don't know if Henry Ford has anything. University of Michigan Health shows a doctor with CRPS as a clinical interest. I don't know anyone who's gone for PM but every Michigander I know who's gone to Ann Arbor has received thorough care they were happy with. Might be worth a phone call...

Keep us posted,
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