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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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#11 | ||
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"Thanks for this!" says: | DejaVu (08-08-2015) |
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#12 | ||
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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.
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"Thanks for this!" says: | DejaVu (08-08-2015), stillsmiling (08-22-2015) |
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#13 | ||
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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 |
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"Thanks for this!" says: | DejaVu (08-08-2015), stillsmiling (08-08-2015) |
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#14 | ||
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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/ |
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"Thanks for this!" says: | DejaVu (08-08-2015), stillsmiling (08-08-2015) |
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#15 | ||
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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. Quote:
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"Thanks for this!" says: | DejaVu (08-08-2015), stillsmiling (08-08-2015) |
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#16 | ||
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Junior Member
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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. |
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#17 | ||
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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.
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#18 | |||
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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? |
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"Thanks for this!" says: | DejaVu (08-08-2015), stillsmiling (08-22-2015) |
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#19 | ||
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That's very true. |
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"Thanks for this!" says: | DejaVu (08-08-2015) |
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#20 | ||
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__________________
Believe in the Strength of Faith and Hope, within there is Peace and Love...Always ~pe |
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"Thanks for this!" says: | DejaVu (08-22-2015), Leggiesmcb (08-22-2015) |
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