Help! We need to find Specialists for CRPS in the Portland, OR Area
 

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.

Thanks,

RSD specialists
 

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.:hug:

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?

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.

Hey Mook,

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

Thank you for the information. We appreciate all the help we can get. Yakima is about a 4hr drive...not so bad!

OHSU help for CRPS in Portland, Or.
 

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! :winky:

Also need doc info for Portland
 

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!

I too have not been "officially" diagnosed as having CRPS...however both the surgeon who performed my last two foot surgeries and my pain doc think it a likely possibility. That said...my pain doc does treat a large number of patients with full-blown CRPS...and I would stiil highly recommend her as she has really helped me control the pain monster. So many paindocs nowadays only do injections - or - only do meds...not only does she do both, but she also does ancupuncture and massage (both in-office or as a prescription to see a therapist of your choice), listens to your concerns about what meds do or do not work, and implants scs units (for patients with CRPS in their feet, like me, she has developed a way to insert the leads in a retrograde fashion so as to only target the foot, and not the rest of the leg along with it).

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.

Thanks for all the information. We recently went to a Ortho Dr. at Legacy Emanuel Hospital. He confirmed there is no structural damage to her ankle/foot. We told him our Physical Therapist is the one that diagnosed her with CRPS. He said she doesn't show all the signs but it could be. He referred us to a Dr at The Children's Hospital at Legacy Emanuel in Portland, OR. It would be in the Pediatric Rehabilitation Services part of the hospital. The Dr.'s trained with the Rehab center in Philadelphia that specializes in intense rehab for people (I think mainly younger people) suffering with CRPS. We are scheduled to consult with them next week. I will keep everyone posted. She has been in PT 3x a week. She had back to back no pain days. However, she says her leg feels "tired". I'm not sure what that means. Hard for an 11 yr to explain. Wish us luck.

I really hope this program works out. I have heard good things about these programs for Children...they have the best chances at remission. It's great to hear that she had back to back no pain days. Good luck to both of you!

Hi Heather 👋🏼

Just became member & saw your post. Never been part of forum before, so hope doing this right . I’m very interested n getting the info on your pain specialist for my CRPS/RSD. Been in severe flare for 8 months now, in & out of hospital but it nice they stabilize my vitals, just send me home, so will only go now if becomes life threatening.

Don’t know how to to DM on here. But if you could help provide that… can’t tell you how grateful I’d be 🙏🏼

You might use our site search or check the sticky threads above the main posting section.
This thread is from back in 2012.

Appreciate that!