RSD institutes
 

Are there any specific RSD inpatient/outpatient treatment centers in the U.S. that any of you have had a good experience with? I am so desperate for doctors that truly understand RSD. I live in Florida, but I am willing to travel ANYWHERE. I have already gone to the Mayo Clinc in Jacksonville (no help) and I had a good friend who didn't have a good experience with the RSD facility in Tampa. Thoughts????

I wish I could answer this directly! Unfortunately my foray into finding a CRPS specialist sent me straight back to neuro and Phys. Med. However, a couple suggestions would be to check http://crpspartnersinpain.com They have a list of doctors who treat and tell you which ones do ketamine infusions. You'd hope if they are doing those they've had some CRPS and neuropathic pain experience. Also the American Pain Society hands out awards for "Center's of Excellence" every year. They have to be multidisciplinary , etc. etc. On their site they post the winners for this and previous years. Stanford has won more than once. I know how frustrating it is trying to find good doctors - don't we all! Sorry all I had to offer was making a bunch more phone calls. But hey, you gotta start somewhere...

Hang in there. Sending healing love, :hug: Littlepaw

One more thought. Case Medical in Cleveland has a twice monthly multidisciplinary CRPS clinic which includes neuro...they are something you need right?

Littlepaw

What issue did your friend have with the facility in Tampa?

Very expensive. Didn't respond to the Ketamine infusions at all, and actually thought there was more pain after going through the entire ordeal.

Don't know where you are but Duke University Clinic in Winston- Salem, NC is exellent...

The "clinic" is actually physicians from various specialties discussing CRPS as part of the fellowship program for pain medicine. It is centered around data and case studies instead of individual patients. University Hospitals are affiliated with CWRU (Case Western Reserve University). But you can get a referral from your doctor to a pain medicine or neurology. As I am sure you have experienced most of the larger hospitals require a referral before they will see you. Good Luck

When I started looking for a doctor of any specialty, I Google that specialty and RSD/ CRPS and the name of the location. That's how I found a doctor who sits on the rsdsa.org board. He had been helpful at finding other doctors that know about this as well.

The National Rehabilitation Hospital in DC knows RSD and is a top hospital. I don't think they have neurologists that can be seen there, but I saw one across the street that is super knowledge and highly rated.

Good luck!

Try these two centers
Anita L. Davis, PT, MSM
3901 University Blvd. South
Jacksonville, FL 32216
(904) 858-7259
(904) 858-7255 (fax)

Specialty: Chronic Pain Physical Therapy; Range or motion; Desensitization; Manual Therapy
Marla Golden, DO
Integrative Pain Management
12443 San Jose Blvd., Suite 104
Jacksonville, FL 32223
904.260.1070 Specialty: Pain Management

Hello,

We are quite desperate for a doctor in the DC/MD/VA are who truly understands and specializes in RSD/CRPS. It seems to be rapidly spreading to my mother's other extremeties and our current pain doctor is unaware that this is even plausible. Can you possibly provide information for the neurologist across the street from National Rehabilitation Hospital that you had luck with? We'd like to give it a shot. Thanks! And so glad to hear you had a positive experience.

I'm from DC and never heard of The National Rehabilitation Hospital. Is it located in a larger facility? and if you know, can you tell me the address?

That's because they do not except insurance. Ketamine and Lidocaine infusions at GW Hospital in DC didn't help my wife either, but that's not the facilities fault overall but her having RSD for years before treatment. Besides, everyone reacts different to treatment.

Faith,

I am so sorry to learn that your Mother's CRPS is spreading and of the difficulties you are having with her pain management doctor. I could add my story to the collective, as my CRPS has indeed spread. I could also offer to swap "war stories" about pain management doctors for hours; however, I think you are most interested in changing your Mother's situation than venting about it.

Have you taken a look at the Chronic Pain management group at Johns Hopkins? My understanding is that Drs. Raja and Christo have a great deal of experience working with CRPS - both as researchers and clinicians. You can find out more information about both Drs. Raja and Christo in the physicians or faculty tabs of the Blaustein Pain Treatment Center at Johns Hopkins University Medical Center in Baltimore, MD.

Dr. Raja, along with his colleague Dr. Peter Moskovitz, of Washington Circle Orthopedics (located in Washington, DC ), are both members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)'s Scientific Advisory Committee. Though an Orthopedist by trade, Dr Moskovitz is also a Clinical Professorship in Orthopedic Surgery and Neurological Surgery at the George Washington University Medical Center. While Moskovitz is not the prototypical CRPS doctor (i.e. he's not a neurologist, physiatrist, anesthesiologist, etc), do not let that deter you from calling his practice (Washington Circle Orthopedics: 3 Washington Circle, NW, #404, Washington, DC 20037, Phone: (202) 333-2820) to learn more about his treatment approach to CRPS.

Good luck!

CrimsomnHoya

Faith a quick article on spread. Take it to her doctor they need to intervene asap to slow the spread with sympathetic nerve blocks before the pain becomes sympathetically independent pain (SIP vs SMP (Sympathetically maintained pain).
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3162139/

DC Doc
 

Faith,

Another poster provided information for Dr. Moskovitz. He's who I see - he's an orthopedic surgeon who specializes in spine injuries and sits on the RSDSA board. My original injury was in my right foot, but he sees me because he is very interested in RSD and has been really helpful. He's my "primary" doc and helps me manage all the other doctor's I deal with.

The Medstar National Rehabilitation hospital is where I go for PT (in OCOR and I see Greer) and for pain management (I see Dr. Numsuwan).

I saw a neurologist at Medstar Washington Hospital Center that Dr. Moskovitz recommended; however, I only saw him once and he confirmed I have CRPS and further discussed my treatment plan - but I saw him after months of dealing with other doctors and having a treatment plan in place that was showing improvement. So I don't think he wasn't to step on any toes and so I haven't seen him since. His name is Dr. Michael Batipps. He's very highly rated and I felt he was a very good an thorough doctor, but it was very hard to see him.

Most of my care is through the Medstar hospital system, including for things outside of my CRPS (like migraines). I've had really positive experiences for the most part, but my first orthopedist was not great, though he did diagnose me with CRPS 3 months after my injury. I hope this helps! Feel free to PM me for more information.

Nrh
 

The National Rehabilitation Hospital is part of the Medstar system. The address is 102 Irving St NW. If you turn into the Washington Hospital complex off Irving St NW, you take a right at the first stop sign and the building is on the right. Across the street is the Medstar Washington Hospital Center Physician's Office building where many of the doctors at NRH also work. That address is 110 Irving St NW.

I do PT at NRH and also see pain management there. I do PT in their acute PT area called OCOR with Greer. The long term PT also deals with CRPS and more of those physical therapists have dealt with it than in OCOR. I'm super lucky I was able to get on Greer's schedule as she has experience with CRPS and has really helped.

Hope this helps. I'm happy to answer more questions.

Spreading
 

Oh Faith, I also wanted to make a comment about the spreading. My CRPS spread rapidly from a small circle on my right foot to my whole foot to my ankle to my lower calf to my upper calf to my knee to my lower thigh to my upper thigh to my hip and now to my left leg. The spreading started in early January. None of my doctors have been able to stop the spreading and from what I've researched, there isn't much that can be done about the spread. My CRPS has spread while I was feeling mostly pain free from a nerve block. I have tried everything I can think of to stop the spread and nothing has helped (meds, meditation, yoga, PT, vitamins especially vitamin C, therapy, and rest). I was trying to control the uncontrollable, and to a certain extent, I feel that my fighting this condition didn't help. Accepting it for what it is has been more helpful to me, though it likely won't stop spread if this disease wants to keep spreading. But I do very much hope that the spreading can be stopped in your case.

I'm not sure about a institute, but Dr Chopra in MD had wonderful reviews, I've heard nothing but great things about him. His first visit lasts well over 2hours & he looks at all symptoms, not just your crps and works with your local dr, so I've heard.

Dr Hannah in FL does ketamine & people also rave about him & his bedside manner. The other is Dr. Kirkpatrick in FL. I haven't heard too too much about him, but have watched some of his youtube videos & he is very knowledgeable & "gets it", seems to have the patient's best interest first.

I believe they were the two states that were asked about?

That's very true.

Are you referring to Dr. Pradeep Chopra? Everything I find on him is in RI. Do I have old information?

Hi I am in Port Saint Lucie, Fl and have had a horrible time since moving here from NY trying to locate a RSD/CRSP pain specialist and just a Dr. who specializes in RSD/CRPS itself. I have found a Dr in Jupiter; Dr. Raso that I have now seen once, he trained under (gosh I don't recall the doc he trained under right now)a Dr originally from Germany I believe that is now practicing in Philadelphia, Pa. Anyway, you know how it goes with the pain Dr's you go the first appt they drug test u and tell u to come back in a month...so I await in pain. He did send me for a neck MRI. I do need to also find a Dr that specializes in this because he only treats pain. When I was in NY the Dr I was seeing was a MD/DO specializing in Pain Medicine but I did go outside his office for the Sympathetic Nerve Blocks @ his office I go my Rx, trigger point inj for back injury as well he would go out of his way to learn about the latest on RSD and treatments. I have since not been able to find a Dr that will treat the disease as a whole.

Thanks so much[emoji4]

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Thank you guys for all the information. I am so grateful for a forum where we can talk about RSD. It's such a blessing.

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