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Old 11-13-2009, 04:00 AM
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fmichael fmichael is offline
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Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default welcome mjl

Dear mjl1261 -

And welcome to the board! This is a place where you and your husband will find much support. And information. For instance, you ask about Dr Rhodes, we have a thread from June of this year called Dr Rhodes And STS at http://neurotalk.psychcentral.com/thread89188.html (The trick is in using the "Search" function at the top of the page, clicking on "Advanced Search" and going from there.)

You don't know it, but you are so lucky that you husband disease was diagnosed early and that he has gotten some relief from blocks. I say that advisedly, based only on anectotal observations that people who had even marginally effective blocks early on (which is when they work: say, in the first five to six months of the disease) appear to have fewer issues of "spread" at the one year mark, and from there on out.

But the real reeson I write is because in that same 5 - 6 month window that the blocks work, people appear to be more likely to go into premanent remission from so-called "low dose" ketamine infusions. If you haven't done so already, get the know the RSDSA website reall well. It's at http://www.rsds.org/index2.html and for a nice little article on ketamine written for a lay audiance, check out "Overview of Ketamine Infusion Therapy" by Philip Getson, DO which origionally ran in the RSDSA quarterly newsletter and is now on its site at http://www.rsds.org/3/treatment/ketamine.html

One, of many, threads we've had on ketamine ran this last June, under the heading low dose ketamine treatment at http://neurotalk.psychcentral.com/thread88065.html If there's a single take home point to that thread, and the articles cited in the posts, it's that of the folks who get "low dose" infusions (as opposed to the 5-day comas that are being induced in Germany, via Robert Schwartzman, MD in Philadelphia and in Monterey, Mexica through Dr. Anthony Kirkpatrick in Tampa, which appears to offer more hope, at substantially greater risk, to the chronically afflicted) those who have had CRPS/RSD for only a few months tend to have much better long term results than everyone else.

Another thread to the same effect (running about the same time) was Article: good news for the newly diagnosed, fair news for the rest of us at http://neurotalk.psychcentral.com/thread88983.html which like the thread mentioned above, was centered in large part around an article bt Dr. Schwartzman, in this case, "The Natural History of Complex Regional Pain Syndrome," Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009;25:273-2, which is freely available off of the RSDSA website at http://rsds.org/2/library/article_ar...lexanderGM.pdf

A third thread (and like the last initiated by me: I tend to have a better memory for things I've written, as opposed to read, what can I say?) is Ketamine, the article that ran a month ago at http://neurotalk.psychcentral.com/thread104838.html That thread was centered on what may be, at a practical level, the most significant ketamine study to date, where it was the world's first double-blind placebo controlled study, "Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study," Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 Sep 22, available on the RSDSA Medical Article Achieve page at http://www.rsds.org/2/library/articl...n_Pain2009.pdf
And the authors were not disappointed:
This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p<0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.
It is studies like this that will lead the way in forcing some now recalcitrant insurance companies (including WC carriers) to cover ketamine therapies without a requirement that the patient first "exhaust" other avenues of treatment, which is to say, put themselves over time out of that group of acute cases who are more likely to benefit from the technique. That said, and possibly because the authors were employing a slightly different techniques than had other low dose studies, the favorable results of the study were obtained from a population of CRPS patients who had been ill for at least six months, and some much longer:
There were no significant differences between those patients with a shorter duration of CRPS (11 patients with an average length of illness of 2.6 years and a range of 0.8–4.2 years) and longstanding patients (8 patients with an average length of illness of 12.2 years and a range of 6.8–20 years).
And for thread on another treatment altogether that also provided a significant incidence of "long term remission" in patients who had only had the disease for six months at the time they started treatment, check out IV regional block with low-dose tumor necrosis factor-alpha antibody infliximab at http://neurotalk.psychcentral.com/thread91280.html

I hope this didn't send you into informational overload, but the point I wanted to make is that time your husband is in good shape in terms of starting one of these treatments while still in the "acute stage," but time is nevertheless of the essence.

I know that it's not exactly down the road from you, but my sense of where your husband might be seen soonest, with the greatest likelihood of getting a relatively esoteric treatment would be the Cleveland Clinic. http://my.clevelandclinic.org/anesth...t/default.aspx As in, call today to see what could be scheduled. And in this regard, it has to be noted that the Mayo Clinic is not the place out of town pain patients want to go: I was advised by a pain management physician there that all of the more cutting edge therapies are reserved for people who live in the immediate area, with whom they can follow up on a regular basis.

Good luck, let us know what we can do for you and welcome again,

Mike

ps For future reference, you are more likely to have you post noticed by more people if you use it to start a new thread, as opposed to one that's been around for years, although I understand and appreciate your desire to honor this thread in particular.
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AintSoBad (11-13-2009), loretta (11-13-2009)