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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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05-07-2012, 10:07 AM | #1 | ||
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Our daughter was recently diagnosed with early stage CRPS and we are trying to find out recommendations for specialists in the Portland, OR (metro) area. We live in Vancouver, WA.
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05-07-2012, 11:30 AM | #2 | ||
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It is very hard to find specialists for this disease. You may have to travel. I live in Indiana, and so far can't find one. You are fortunate that your daughter is in the Earl stages. She has a good chance at remission with the right care. A neurologist will be helpful and can help you with your search. In the meantime, keep the faith and do your research. There is a ton of info out there. It is awful to see your child in pain. I feel for you.
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"Thanks for this!" says: | MOOK (05-07-2012) |
05-07-2012, 11:38 AM | #3 | ||
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I was unable to find any in OR, but I did find one in WA - Waters Edge Pain Relief Institute 509-574-3805 in Yakima WA. I have no clue how far Vancouver is from Yakima, as I'm from NJ and completely unfamiliar with OR or WA, but maybe this will help?
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05-07-2012, 12:23 PM | #4 | |||
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I'm very sorry to hear what you and your daughter are going through. If you think she can travel then I would definitely consider traveling to go to one of the great hospital clinics/programs that are out there. I have heard good things about the Boston Children's Hospital and the Cleveland Clinic...though I don't have any personal experience with them. Hopefully others will chime in with more options and their own experiences. I would definitely consider researching this type of program and go where you think sounds the best. Children and those early on in RSD have the best chances for remission and you want to make sure you get this treated as aggressively as possible, as early as possible, for the best chances at that remission. I wish you and your daughter the best of luck.
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05-07-2012, 03:05 PM | #5 | ||
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I live in Seattle, WA and my pain doc here has just opened a sister clinic down in Portland. She splits her time between offices...but she has been a Godsend for me. She treats many patients with CRPS. I'm sure it is not quiet as goo as one of the BigWigs talked about so often here...but I have found her to be extrememly helpful. I'm not sure what the forum rules are here, and if I can post names/clinics...but if you want more info shoot me a PM. -Heather |
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05-07-2012, 09:11 PM | #6 | ||
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Thank you for the information. We appreciate all the help we can get. Yakima is about a 4hr drive...not so bad!
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05-08-2012, 10:41 AM | #7 | ||
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I also live in Vancouver, Wa. I have never been there because my insurance won't cover it (L&I), but I hear there is a doctor there who specializes in the study of CRPS. Hope this helps!
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05-11-2012, 12:08 AM | #8 | ||
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Coral,
I can't figure out how to PM you, but I am also curious to know about your doctor with an office in Portland. I don't think there's any rules against posting that info on here, bu if you'd feel more comfortable PM'ing that's fine with me. I don't have a diagnosis of CRPS (TOS, DDD, c6 bulge, rib dysfunction, occipital neuralgia so far) but I've also never been evaluated for it. It sounds like something that happens with me when my symptoms get very severe. I'd like to catch it early if I have it. Did your doc diagnose you? Thanks! |
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05-11-2012, 01:41 AM | #9 | ||
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All that said - I will post her name here (mods, if that is not allowed, feel free to edit, etc): Dr Rajni Jutla. Her Seattle clinic is called "Mind Your Body Clinic" and I believe the Portland clinic is called "Mind Your Body Institute" Assuming Oregon's rules and regulations are like Washington's...you will need a referral before she will see you. |
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05-21-2012, 07:06 PM | #10 | ||
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"Thanks for this!" says: | catra121 (05-22-2012) |
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