This is my first post. I am here because my husband has been diagnosed with CRPS 2. He ran his hand over his table saw and chewed up his radial and ulnar nerves. No bone damage, just nerves, arteries and muscle. All has been surgically repaired, part of which required a nerve graft from his leg.

Post surgery he was confined to a splint and not allowed to remove it for two weeks. Then he was sent to PT and allowed passive exercises only which he did religiously every hour, as instructed. About two weeks into the therapy he started complaining about swollen and stiff fingers that made his exercises very difficult. I told him to show the surgeon at his next appointment and my stoic, ex-marine husband said, "He knows they're swollen."

When the splint came off two weeks later, the surgeon said, "Hmmm. Your fingers are really stiff. Looks like you have CRPS. Go see our pain management doctor." Husband comes home extremely upset. All he wants is for his hand to be usable.

Long story even longer, he had a ganglion stellate block which did nothing. Five minutes in the recovery chair and he was already complaining that the pain was still there, not even minimized. This past Monday they did a brachial plexus block. Five minutes in the recovery chair and he swore he could still feel burning right at the end of one of his scars. I told him that couldn't be true since his arm was numb from his neck to his fingertips. About an hour later he insisted that there was pain although minimal. I decided a 50-year-old man ought to know when he was feeling pain. In spite of that, we had 18 hours of relative bliss, toasty warm fingers, an awesome PT session where they twisted his fingers and wrist into pretzels, and then the block wore off and we're back to the way he was before the block. His range of motion is still better than before the block, which is encouraging, but most of it went away when the block wore off. Our follow-up with the PM Dr. is this coming Monday and I'm anxious to hear what he has to say. We assume the block was a spectacular failure since the pain resumed right away and we also want to hear his thoughts on my husband still feeling the burning. Strange. I plan to ask about the possibility of compressed nerves and neuromas as well as his position on alternative treatments.

In the meantime, my sweet husband has not responded to Lortab, Percoset or gabapentin. We are struggling to remain positive but he's just sure his options are dwindling to near-zero. I keep reminding him that we are only ten weeks (since the initial accident) into this and are still extremely early stages. But he wants his results now. I think he would be much more reasonable had any of his treatments worked even a little but but so far we're batting .000.

I have no words to express how relieved I am to find this thread. Nearly everything I find on the web is negative, negative, gloom and doom. I love hearing stories of people who have beat this, especially with non traditional treatments. We haven't tried a single one of them yet so still have many options ahead. As head cheerleader of my little team, I need all the ammo I can get!

I just cannot wrap my mind around the idea of him having this pain for his whole life. I feel in my bones that his solution is out there, we just have to find it. Do I trust this feeling or am I simply in denial and everyone goes through this...?

Speaking of alternative treatments, I've found a site for a pain center in Corpus Christi, TX where they use a painless, non-invasive treatment that stimulates accupressure/accupuncture points. A Dr. Rhodes runs it. They supposedly get great results but they don't post testimonials from people who were disappointed. Has anyone out there heard of this place? Are they good or a bunch of quacks? We live in Oklahoma so the drive down would not be difficult for us. Any ideas how much they charge for these treatments? We have some money saved up and are currently debt-free but are plain, working folks like everyone else. Still, I would mortgage everything I own in order to pay, if it works.

Anyway, I just want to say again thanks for the positive posts. They have done more for my husband than any of the drugs or the nerve blocks! I understand that people out there who have dealt with this for a long time may think I'm being a whiner and if so, I apologize. I don't mean to. I don't feel whiney. It's just that this is brand new to us and right now we're pretty much just terrified.

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.

Hello and welcome mjl1261,
I copied your post on the other thread to a new thread just for you.

Welcome to NeuroTalk MJL1261!