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 02-03-2015, 08:31 PM #1
stillsmiling stillsmiling is offline
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Default 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????
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Old 02-05-2015, 02:38 PM #2
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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, Littlepaw
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Old 02-05-2015, 02:56 PM #3
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One more thought. Case Medical in Cleveland has a twice monthly multidisciplinary CRPS clinic which includes neuro...they are something you need right?

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Old 02-05-2015, 02:58 PM #4
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What issue did your friend have with the facility in Tampa?
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Old 02-20-2015, 06:47 PM #5
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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.
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Old 02-21-2015, 06:42 PM #6
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Don't know where you are but Duke University Clinic in Winston- Salem, NC is exellent...
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Old 02-21-2015, 07:48 PM #7
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One more thought. Case Medical in Cleveland has a twice monthly multidisciplinary CRPS clinic which includes neuro...they are something you need right?

Littlepaw
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
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Old 02-23-2015, 10:40 PM #8
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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!
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Old 02-24-2015, 12:36 PM #9
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Quote:
Originally Posted by stillsmiling View Post
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????
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
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Old 03-22-2015, 08:40 PM #10
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Quote:
Originally Posted by maygin View Post
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!
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.
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