[hollyk24]

My parents have offered to fly me if I can find a doctor that actually knows rsd - I'm finding that every doctor in my area says they do, but when it comes down to it they are not up on treatments and when they see my foot they freak out like they've never seen rsd symptoms before. I just had a scs implanted and my current dr thinks it's caused my rsd to spread to my back and abdomen - and then tells me I need to see a psychologist because it's my fault it spread! Not to mention that he put the battery right at my waistline so everything I wear is right at the incision I'm stuck wearing low riders at the moment . . .

I'm pretty much limited to the west coastish area - but as far out as Utah because I have some family I could stay with in almost every major city there. I'm guessing California would be my best bet, but I'm open to any suggestions for drs in Washington, Oregon, California, Idaho, Nevada, or Utah (or another close state if you know of one).

Thanks!

[rsdwife]

My husband was treated by Slocum Orthopedics, its a sports medicine clinic in Eugene. His PM Doc is Dr. Phillips. He has been a wonderful Doctor. He has been with us from the diagnosis, scs implant, and through our w/c battle. it was his reports that help us prove our case against workmans comp. I wish the best for you!

[StillWishing]

I have had wonderful success with Dr. Joshua Prager out of UCLA Medical Center. He has done my spinal implant in both my upper and lower regions of my spine. He is phenomenal. You can find him at california pain medicine center. Hope this helps and you get the relief you need as fast as you can get an appointment. And remember - this dreadful disease is never YOUR fault. Your silly doctor needs to live with this for just one day to think before he speaks

[vanityfaire]

There is a Rehabilitation Center on Aurora North in Seattle Area. They are doing a Rehab program with pain management. It is an everyday thing for about a month. They use anestethiologist to inject pain pump medicine while you do OT and PT everyday. They are using mirror therapy and psych with the protocol too. My Dr., Dr. Cheryl Hayes and her PA are sending me there. i don't know how I can do a daily with working so I have it on the back burner. Ketamine is coming to our area in the near future..My Dr. office is Core Injury Management. She is board certified in determining Disability as well. Not many out there doing things with RSD but she highly respects her patients and honors their fight for quality of life.

[fmichael]

Dear Holly -

I would be very concerned about a physician reference appearing in someone’s first posting on the forum, see #3 above. While no one disputes that Dr. Prager knows his stuff, I have been told that he is not currently accepting medical insurance. And I did not personally have a good experience with him. In that regard, let me refer you to a thread that ran here a little over a year ago. Good RSD MD In So CAL http://neurotalk.psychcentral.com/sh...d.php?t=106250 The discussion is fairly to the point.

And I’m thrilled that vanityfaire has found a good doctor in Washington State. It would seem to be a miracle. Having gone down this road for a while, with the assistance of an uncle who is a retired psychiatrist in Seattle, I can tell you that the Pacific Northwest is something of a wasteland, Washington State in particular. There, the University of Wash. Medical School's rigid insistence upon the "cognitive behavioral" school of treatment (there is no cure and the patient's worst enemy is self-pity) has recently been enacted into state law, which will become effective in mid-2011 with the adoption of "best medical practice” guidelines, severely controlling the prescription of opioids or narcotics to patients with non-cancer chronic pain. Put it this way, my uncle emphatically told me that he could not recommend any pain specialist in the State of Washington for the treatment of intractable pain, and in particular, CRPS. Then too, they have their new and frankly draconian laws coming into effect on the use of opioids or narcotics by chronic pain patients without cancer, and they are pretty draconian. See, “Move to Restrict Pain Killers Puts Onus on Doctors, by Barry Meier, New York Times, July 28, 2010 http://www.nytimes.com/2010/07/29/bu...hington&st=cse

Moving down the coast, we have the Comprehensive Pain Center of OHSU, with which you must have some familiarity. And just looking at their list of “Diagnostic & Therapeutic Services” on their website suggests that they are not exactly into rocket science. http://www.ohsu.edu/xd/health/servic...herapeutic.cfm Ditto the “goals” of their Pain Management Fellowship, which still makes reference to training in the use a radio frequency ablation. http://www.ohsu.edu/anesth/Education/painfellow.htm

And while I can’t speak to Dr. Phillips in Eugene, whom rsdwife recommended, I note that he is at least board certified in pain management by the American Board of Pain Medicine, the group which certifies pain management fellowships in the U.S. What this means is that, in addition to a doctor’s residency, s/he took a separate one-year fellowship in pain medicine, and then sat for and passed an 8 hour written exam. They are serious people. That said, not all ABPM certified specialists in pain medicine do a lot of work with RSD/CRPS, in fact, most probably treat lower back pain more than anything else: and in fact there are a couple of ABPM certified specialists at OHSU, whom you many have already seen.

(For a search engine of the ABPM certified specialists in pain medicine, go to its Public Directory http://www.association-office.com/ab...dir/search.cfm You can search by geographic area, gender and specialty of origin. For what it’s worth, you don’t need someone who completed a residency in Physical Medicine for CRPS. There neurology is probably favored, with anesthesiology and psychiatry coming in tied in close second, bearing in mind that a one year fellowships follows whatever prior training the physician received.)

And as set forth in the Good RSD MD In So CAL thread, above, I and a lot of people are very happy with Steven H. Richeimer, MD, Director of the USC Pain Center:

Steven H. Richeimer, MD
Chief of Pain Medicine, Assoc. Prof. of Anesthesiology and Psychiatry
Keck School of Medicine, University of Southern California
Director, USC Pain Center
1520 San Pablo Street, Suite 3450
Los Angeles CA 90033
323-442-6202
332-442-6255 (fax)

Dr. Richeimer has advised me that he routinely sees out of town patients for consultations and treatments. In fact, for the first four or five years that I saw him, it was only on a quarterly, consultative, basis, in which he made recommendations to my treating neurologist, who then prescribed my medications. And at our first appointment in 2003, Dr. Richeimer himself referred me for a consultation with Robert M. Schwartzman, M.D., whom I saw the following February, and through whom I was scheduled to go to Germany for the ketamine coma in October of 2004, before the doctors in Germany balked at treating me with ketamine because of preexisting glaucoma: an issue that continues to complicate my treatment to date.

In the Bay Area, Dr. Richeimer suggests that it would be worth flying in to specifically see Michael S. Leong, M.D., who is currently the Interim Clinic Chief, of the Stanford Pain Management Center http://paincenter.stanford.edu/ Dr. Leong’s contact information is as follows:

Stanford Pain Management Center
450 Broadway Street
Pavilion A, Suite A18
Redwood City, CA 94063

Telephone: (650) 723-6238
Fax: (650) 721-3414
E-mail: msleong@stanford.edu

Admin Contact
Matthew Chen
Telephone: (650) 723-0589
E-mail: mtchen@stanford.edu

Finally, just north of San Francisco, I've also heard good things about a pain management specialist in Marin County:

Robert Hines, MD
Bay Area Pain Medical Associates
3 Harbor Drive
Suite 303
Sausalito, CA 94965
Telephone (415) 380-0480
Facsimile (415) 380-8788

http://www.bayareapainmedical.com/index.html

A close friend of mine, herself a psychoanalyst and whose daughter and son-in law are both physicians, was treated by Dr. Hines for many years and thought the world of him. (I don’t have any inside information on his partner, Michael Moskowitz, MD, MPH.)

I hope this is useful.

Mike

[hollyk24]

Thanks! I knew about the stuff going on in Washington, because I live so close, and figured that wouldn't be much of an option, but at worst they could give some recommendations to my docs down in Oregon. OHSU has pretty much been a bust for me - they don't really seem up to date at all, I saw 2 drs there and neither had even heard about ketamine as a form of treatment. No doctor I've found in Oregon does any type of infusion therapy - it's all just the standard meds (and just the basic ones at that) nerve blocks, and scs implants. Nothing outside the box, and when I mention something they always shoot me down and tell me it's not worth my time or money to even look into (things like HBOT or infrared light therapy) I actually went ahead with a modified version of the infrared light therapy and was able to drastically reduce the allydonia in my feet to the point where wind no longer hurt!

I was thinking Cali was my best bet, so thanks for the leads - I'll check them out Thank you very much for your help and all the info, it's much appreciated!!!!!

[daniella]

I have seen doctors in 3 states CA,MI,OH. I think when you call it is good to ask what pain treatments that doctor offers especially if you are looking out of the box. Some doctors seem to have their "thing" for rsd rather then looking at you as an individual. I will say one of my better pain doctos I found from a suggestion on here. I had already seen top rsd people at Cleveland Clinic and was still in a bad state so I called up a teaching hospital in my areas there pain clinic. I explained my condition and asked if they had a pain doctor who worked with rsd a lot. It was not a student obviously that I would not do but he was the head of the anestesologist dept. Anyhow he really listened to me and looked outside the box. He also did not go along with what other doctors said. I am not seeing him anymore just because I am now out of state and overall invasive treatments seem to do more harm then good at the moment for me. Ok sorry to go on. I hope you can find someone who can give you relief.

[Truffle]

Hi, Mike-- separate subject, can you recommend any physical therapists in the L.A. area who are familiar with treating RSD patients? Just moved back to L.A. and am waiting for my PCIP insurance to kick in to see a doc, but in the meantime am trying to find a good PT. Thanks!

[tmullen]

Originally Posted by Truffle

Hi, Mike-- separate subject, can you recommend any physical therapists in the L.A. area who are familiar with treating RSD patients? Just moved back to L.A. and am waiting for my PCIP insurance to kick in to see a doc, but in the meantime am trying to find a good PT. Thanks!

I to have seen Dr. Sajben she was very understanding and caring, i to did not have any luck with her concotion of medication but i do have a friend that has gotten his life back thanks to her treatments. i recommended her if you tolerate meds well.
Kern Physical Therapy in Santa Monica the physical therapist is Rami he is unbeliveable.

[fmichael]

Originally Posted by Truffle

Hi, Mike-- separate subject, can you recommend any physical therapists in the L.A. area who are familiar with treating RSD patients? Just moved back to L.A. and am waiting for my PCIP insurance to kick in to see a doc, but in the meantime am trying to find a good PT. Thanks!

Sorry, just saw this, exactly a month late. And yes, I've got some information.

The first thing - and this if HUGE - is that U.S.C. is now turning out people with post-graduate degrees in physical therapy. The program takes roughly 3 and 1/2 years, at the end of which folks come out with a "Doctor of Physical Therapy" (DPT). And a remarkable knowledge of neuro-anatomy, based in part on cadaver studies! And this from the program's webpage:

Since the Division was founded in 1945, it has been at the forefront of the most significant advances of the physical therapy profession. The program today is ranked #1 in the country by U.S. News and World Report and continues to be a center of excellence for clinical practice, education, and research in physical therapy.

At this point, many the owners/principals of the top PT practices in Los Angeles County are members of the department's clinical faculty, and who, in turn, employ the program's DPT graduate almost exclusively in their practices. Here, for instance is the webpage of Layfield & Associates Physical Therapy in Encino, where after years of bumbling attempts at "strengthening" elsewhere - that only made me worse - I was offered a series of "nerve gliding" exercises that for the first time brought significant relief from what had been chronic and disabling spasms in both legs, which had previously responded only to Marinol, a synthetic "Delta-9 THC" that otherwise left me completely wasted. (And here's the profile page of Susan Layfield PT, DPT, MS, OCS, on the USC site.)

And check out the DPT program catalog, if for nothing else, the required coursework.

And that's just the beginning, the top students are then offered the opportunity to participate in 1-year residencies in area practices, but with all
of their patient treatment under the guidance of full-time university faculty. Accordingly, when I was seen two years ago at Layfield & Associates, I received absolutely outstanding treatment from a young DPT who was then in an orthopedics residency, on account of which my treatment was reviewed weekly by her professor, who sat in on one or more of my treatment sessions over a two or three month period. And as a 100% satisfied customer, I can only imagine what it might have been like to have been treated by someone in the USC/DPT Neurologic Residency Program!

And to that end, for those who would find it convenient to be seen at either USC's Health Science Campus in East LA or at a smaller office on the main "University Park Campus," the school itself offers a fairly comprehensive Pain Management Program, specifically referencing the treatment of CRPS, in which it's apparently possible to book treatment directly with its staff members, as opposed to students in training.

And finally, for anyone on the Westside, I would be remiss if I didn't offer a referral to my own treating therapist, Jennifer Reynolds Carr, DPT, OCS, now practicing at Wehner and Associates Physical Therapy in Santa Monica.

I hope this is (still) useful.

Mike