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 11-21-2008, 11:17 PM #1
richard d richard d is offline
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Default Doctors list?

Why is there no list of doctors who specialize in this disorder, or are their so few that listing them is pointless?
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Old 11-22-2008, 02:37 AM #2
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It's pointless. You have a couple that can truly be called rsd specialists,1 example that comes to mind first is Dr. S. There are still far too many docs who don't believe it's even real and are the ones who say "You can't still be in pain,it's all in your head." I say to them, yeah right....whatever! LOL Then there are docs who know the very basic amount of info about rsd but may be at least able to recognize it when they see it and lastly, those docs, like my pm, that sees many rsd patients, is well educated about it and can treat it, well, as much as rsd can be "treated".

Oh,the docs who know what it is but are still in the stone ages with much of their info insisting if you don't have A,B and C then you can't possibly have rsd and the best line of all....it CAN't spread!! *snorts* HA! I have a few thousand people, myself included who are living proof that it dang well does! LOLOL

I wish ALL docs and incoming docs were well trained and educated about rsd, how to dx and treat according to each individual and not making sweeping generalizations. We all have the same dx but not one us experiences it the same way. I think that's why it's impossible to make any headway in treatments,never mind finding a cure one day. Take blocks for example. 10 of us can go in for lumbar blocks and each one of us will have a different reaction to it,whether it's good,bad or neutral. Now how are researchers supposed to find the "one" treatment to stop it when we all react differently? That's something that occurred to me within the 1st year.

Hugs,

Karen
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Living, loving and laughing with RSD for 14 years and counting.
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Old 11-25-2008, 12:45 AM #3
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Dear Richard -

I'm not sure it's all that hopeless. In fact, one thing that this board has been good for over the years is that when people list a specific geographical area, sometimes (but not always) a wealth of good responses pop up. For some odd reason, many of the best practitioners are in the Northeast - there are specifically clusters around Boston and Philadelphia, to my knowledge - while there are a couple of very good docs in San Francisco, and a terrific guy at USC in Los Angeles. To say nothing of strong departments at the Cleveland Clinic and Johns Hopkins. I also understand that there's a good department at Vanderbilt in Nashville,* and I am sure that there are a number of others in university settings as well. That said, there is apparently a dearth of quality care in many regions of the country, the Pacific Northwest for one. (And sadly, the Mayo Clinic is nothing to write home about, unless you're fortunate enough to live in or near Rochester MN, where they have a real issue in treating "out of area" pain patients, in contrast, for instance, to Dr. Schwartzman who had no problem seeing me in Philadelphia when I flew in from L.A. for treatment.)

I don't know if you've done this, but it doesn't hurt to start a thread with, "Does anyone know any good doctors in the _______ area?" In fact, if you're very lucky, you just might find something using a variation of this last sentence as a template in the search engine on the site. Specifically, using the "advanced search" feature, try a search of thread titles only for "doctors" or "doctor" or "doc" along with name of your city/state/region. Unless you know it's been done without success, it's worth a shot in any event.

Good luck.

Mike

*I've spoken to someone who's quite happy with his care at Vanderbilt.

Last edited by fmichael; 11-25-2008 at 09:40 PM. Reason: Vanderbilt
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Old 11-25-2008, 06:25 PM #4
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Default Hi Richard,

Like you, I don't understand why there aren't many Drs. that are up on RSD enough to help with it. We just got a new PM Dr. here in our dinky town and a friend of mine likes him so I am hoping this is a good thing.

I think that many things contribute to not enough good Drs. I believe that due to the extent of care RSD patients need, it becomes timely and costly and Drs. just donot want to learn enough about it due to that. Also, the meds. We need Narcotics and other hard core meds and the news keeps putting out things about the addiction to them and that scares Drs. off.

I just saw on the news last Wed. that 2% of Anesteologist are hooked on narcotics and also there are a lot of deaths occuring from certain ones which they constanly name. I believe we take one step forward and two backward on Drs. relaxing about giving out meds and then the Gov. starts crap.

I often wonder how much research is really being done for RSD and if any money is going into it compared to so many other illnesses.

I was just thinking today, I'd like to go to Washington. I'd like to argue with those people up there over a few things including RSD. Instead, I just got a letter off to the President for now.

We all need to take even baby steps to get more people to even know about RSD along with Drs.

I have also heard a lot of bad stories about the Mayo Clinic and how little they have done to help RSD patients. We hear a lot on here about some of the others. If you weigh the good with the bad of what you hear on here from our group, it sure makes you wonder about any of the Drs. dabbling in RSD.

Ada
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Old 11-25-2008, 09:29 PM #5
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Dear Ada -

We have to be careful to look at the donut and not the hole, as my mother says. While they may not be conveniently located, the fact of the matter is that many medical schools affiliated with major universities have perfectly good RSD docs on staff. (Sadly, there are exceptions, UCLA here in L.A. being one of them.) The trick is in tracking them down, but with a little effort, it's not that difficult. And the joke is that medical school doctors tend to take all insurance and are somewhat cheaper than many physicians in private practice: they're not in it for the money. That's where my doctor is and I'm beginning to get the sense that - overall - it's a good fit for relatively archane and often frustrating conditions like CRPS.

Moreover, I commend for your consideration an editorial written in lay language that appeared in 2007, in a leading medical journal, Pain, "Editorial: How common is complex regional pain syndrome-Type I?" (Stephen Bruehl and Ok Yung Chung) Pain 129 (2007) 1–2. Because the editorial is so short, I am able to attach it here. The bottom line is that the authors reject a much more conservative estimate by Paola Sandroni of the Mayo Clinic - who saw me in 2002 and applied her conservative criteria and ruled that I didn't have RSD/CRPS - and conclude instead that the actual rate of new cases is somewhere between 16.8 to 26.2 per 100,000 per year, which should be more than enough to encourage young doctors to enter post-doc fellowships centered around the treatment of CRPS.

So I guess I can't agree that the situation is as dismal as some have painted it, at least if you're lucky enough to live near a major university medical center that, in turn, is with the program.

Mike

Last edited by fmichael; 11-25-2008 at 11:57 PM.
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