In other places (newspaper and magazine articles; anyplace Robert Schwartzmann can get his name out - and his commercial in), he has claimed 100% success for this German ketamine coma.

The problem is that those of us who were at the BrainTalk Forum at the time remember Kit Delucca: who returned from Germany with no relief whatsoever. So much for 100%. Could there have been, as President Bush might put it, other less successful successes?

Due to almost criminally inadequate medical screening (the failure to obtain a complete medical history - essential when you are trying a dangerous medical experiment on a living human subject), Kit not only returned with the same RSD, but also severe esophogheal damage; the result of laying flat and unconcious for so long. That won't get better either.

The FDA won't allow doc S to try his coma experiment on people in this country, so in order to make money selling ketamine, those newspaper and magazine commercials contain the message that his 5-day outpatient ketamine infusions work pretty well.

According to other Forum members, doc S charges $25,000.00 (cash, check or money order - insurance won't pay for it) for these 5-day outpatient events.

I don't know how much ketamine costs, but veterenarians use it to treat dogs, cats, horses (and maybe even gerbils), so it can't be too expensive. doc S may or may not insert the needle for the infusions (at that price, he should); but after the needle is in you, the most he can do is sit and watch.

That leaves only the outpatient treatment room. If we give the doc the benefit of the doubt and say the combined cost of ketamine and his expertise is $2,500.00 per treatment, that outpatient room better have five-star room service: $2500.00 per day will get you a nice room in Vegas, and you get to stay in it for 24 hours.

There have been wonderful pronouncements about the length of remission following outpatient infusions. In reply to something not nice that I said about them, Mike posted a link to one article that couldn't stop talking about success.

Well, folks, I'm almost 64, and in my old age I have become a really crochety curmudgeon. A bit of a cynic too. I reviewed the article with a touch of skepticism. OK, more than a touch. I can be a real pain in the *** when I want to be, and my comments showed that.

We all pretty much know that that if you're going to get better, you should start trying early. (I have a small problem with this, because I haven't seen any studies showing people with chronic RSD do recover, and nothing about which interventions offer greater hope for that happy event).

I have come to suspect that "getting better" pretty much means the length of remission from sympathetic blocks; and the sooner you get them, the longer the potential relief - if they work at all. Blocks, of course, eventually stop working.

But if there is such a thing as permanent remission from RSD, which suggests a therapy that can lead to such remission, the only documentation I have seen have been individual case studies; only considered somewhat more reliable than anecdotal reports.

Anyway, I read the study Mike wrote about, and I noticed that patients who had RSD less than six months had the really long periods of remission. Amazingly long.

Those patients who had been diagnosed more than three years previous showed more ambiguous results: mainly because someone forgot to do follow-ups on them.

Now, from my research into this disease, I agree with Sudek, Goris, van der Laan and others that the first stage of this disease involves inflammation, and that it can last from three months to several months.

Since researchers have demonstrated that ketamine, lidocaine and bupivacaine (all of which have been infused into RSD patients and provided temporary remission), have antioxidant properties; and oxidants (especially oxygen free radicals), play a central role in inflammation.

It isn't unreasonable to suggest they may be effective against early RSD in this manner. Drugs such as morphine, have no antioxidant effect, nor have they been shown to be effective in temporarily suppressing RSD symptoms.

This isn't proof, of course, but it is an alternative explanation those researchers should have excluded, and science isn't supposed to allow you to "cherry pick". It is a viable alternative, and they chose to ignore it rather than address it.

I don't know how ketamine and these other drugs alter RSD symptoms, but neither do the people who proclaim how wonderful they are. I don't believe their reports of incredibly long-term remissions either. Many of those folks are friends of doc S: if you lie down with dogs, you arise with fleas.

Yup, I believe in guilt by association. Choose your friends wisely or something may come up and bite your ***.

I probably should have kept track of Forum members (here and at BrainTalk) who reported getting ketamine infusions. I recall more complete failures than partical successes, and no remission lasting even a year, but can't swear to it.

Ketamine is a dangerous drug. No one really knows how dangerous, because it has only been FDA approved as an anesthetic, and physicians who use it for off-label research may not be as willing to report adverse reactions resulting from that use.

I do know this: There have been serious breaches in the reporting of "successful" ketamine use in RSD. I also know that Robert Schwartzmann is not quite an honest man. In fact, he may have authored the first outright deceptive article I ever read about this disease.

In that article, he claimed "permanent" relief of RSD symptoms following several sympathectomies. He did it by defining "permanent" as two years; he wrote that 50 years after RSD clinicians began to report that the effects of these procedures rarely lasted much longer than two years.

He didn't exactly lie, but he fell far short of being honest. We expect rigid honesty from scientists, but doc S isn't a scientist: He's a ketamine huckster. I could cite more examples of the divergence between doc S and the truth, but this post is about ketamine.

I don't blame CNN for airing a commercial for doc S; I know they are supposed to have physicians on staff or on call to verify scientific claims, but RSD is one of those hopefully rare disorders in which nearly 100% of the RSD experts are dead wrong. It would be surprising - and a real waste - to learn that CNN had someone who knew what this disease really is. A waste because we need him/her more than CNN does.

I was disappointed with some of their graphics; the ones about the brain. This disease has experts who are deliberately trying to deceive and confuse with claims that this problem is found in the spinal cord. I'm sure it was unintentional, but graphics of the brain in the context of RSD will only further confuse people.

About that particular patient: researchers in several fields are reporting major differences between adults and children; including recoveris from disorders (in many instances, kids get better while adults don't). Stem cell researchers have reported that other cells in children are more malleable than in adults; kinda like stem cell wannabe's. An unscientific way of saying it, but so what?

I hope she stays better for the rest of her life. I think we all feel worse when we learn a child has been cursed with this disease.

Shortly after I began researching this disease, the surgical sympathectomy was finally abandoned. So far as I know, only Kirkpatrick (Medical Chair of RSDSA) write about their continuing usefulness. But all was not bright: it was being replaced by the chemical sympathectomy.

I didn't really understand much about this disease back then, but a chemical sympathectomy sounded pretty stupid to me. I never raised my voice in protest. Not that raising my voice would have stopped anyone; I've been telling people for five years that the antioxidant grape seed extract prevents symptom migration, and feeling utterly impotent every time someone else says it's happening to them.

I knew that Vioxx and others like it would not help RSD patients, but I didn't write any posts saying so. Who knew they would end up killing people?

I don't know whether ketamine will end up killing anyone, or causing permanent brain damage, but I don't like the thought of a girl waking up and not recognizing her parents.

I do know ketamine isn't as effective as it's proponents claim. I do know that ketamine comas aren't 100% successful. I do know that outpatient ketamine infusions don't do what doc S says they do. And I do know that $25,000.00 for an outpatient room and some ketamine is way too pricey.

As I mentioned in another post, doc S is getting older and should think about building up his nest egg. I just don't think he should be dishonest about the way he goes about it...Vic

I have to say very good information from VICC...I for one am worried about my surgical sympathectomy that I had done to me for my RSD I'am now reading about it more it is amazing to know in a few countries it is against the law to have this procedure done, makes you wonder. I have to now deal with RSD and TOS along with the symptoms surgical sympathectomy brings on wich another new list of things for me. Yes I agreed to have it done as I was told I was left with no options thanks to WORKERS COMP and being untreated for so long I had no quality of life this way the docs all said I had a chance and if it did not work than what? would I lose as they said...
I hope and pray for a cure I know it may happen or never it all depends on us and the medical field doing something about this. I believe BIG Ins. is fighting this tooth and nail knowing the cost of this to people and want to bury this or have doctors fight each other over this. Funny how it seems how we are made to look like we a crazy by some doctors, and even PT's all working for the Ins. company first thing they do is label us as slackers or say we are not trying hard enough in PT and of course we do harder and end up making it worse for us! doing the wrong PT that is orderd.
Finally we find a good doctor and that leads to more good doctors who understand what is going on and we start getting help, but we must fight for it and try to get it,I've had several doctors look as though they wanted to scream and or cry about my condition when they saw me all said the same thing SORRY, I said for what you did nothing wrong it wasnt you! but they said sorry still for what I would have to live with the rest of my life, with RSD and TOS with the surgical sympathectomy again saying what do I have to lose..I hope they get their act togather soon and start researching this it would be cheaper for them (INS.) in the long term if there was a cure or some kind of treatment used for us all.
I know it was long but it just ERKS me to no end that we are treated like dirt.
Nice post thanks, VICC and Hubby with RSD and every one else..
flippnout

At the risk of prolonging this encounter, I just want to respond to the one narrow point upon which Vic has invited my comment, and that is his assertion of Dr. Schwartzman's "unethical" conduct in promoting remedies which he knew or should have known were not as effective as he claimed.

Vic starts with reference to an unspecified article in which Dr. Schwartzman suggested that surgical sympathectomies gave "permanent" remission (which it is asserted was artificially defined as two years) of symptoms. I have tried to find this assertion, but going through a number of articles by Dr. Schwartzman that are posted on the RSDSA Medical Articles Archive page [http://www.rsds.org/2/library/articl...ve/index.html], it's not there. Now, obviously Dr. Schwartzman has written a lot more than these articles, but if you look at them, none of them are truly leading the clarion call for sympathectomies in the absence of the then available medical data, as has been suggested. Check these out:

1. "Reflex Sympathetic Dystrophy, A Review," Schwartzman RJ, McLellan TL., Archives of Neurology 1987; 44: 555-561

2. "The movement disorder of reflex sympathetic dystrophy," Schwartzman RJ, Kerrigan J., Neurology 1990; 40: 57-61.

3. "Reflex Sympathetic Dystrophy, Occurrence of Inflammatory Skin Lesions in Patients With Stages II and III Disease," Webster GF, Schwartzman RJ, Jacoby, RA, Knobler RL, Uitto JJ, Archives of Dermatology 1991; 127: 1541-1544 and

4. "New Treatments for Reflex Sympathetic Dystrophy," Schwartzman RJ, The New England Journal of Medicine 2000: 654-655.

Yes, if you go back to his 1987 article with McClellan, "Reflex Sympathetic Dystrophy," he says, at page 558 that, "[f]or patients with severe or long-standing disease, sympathectomy should be performed early if there is any response to a paravertebral ganglion block." And in his 1990 piece with Kerrigan, "The movement disorder of reflex sympathetic dystrophy," there is the following at page 60, "[s]ympathectomy in an extremity that has been successfully blocked gives the best long term result." But these writings cannot be taken wholly out of context.

Indeed, I think I have found the article Vic may have had in mind. See, "Long-term outcome following sympathectomy for complex regional pain syndrome type 1 (RSD)," Schwartzman RJ, Liu JE, Smullens SN, Hyslop T, Tahmoush AJ, J Neurol Sci. 1997 Sep 10; 150(2): 149-52 (retrospective study of 29 patients with CRPS1 (RSD) who were initially examined between 1983 and 1993, and had either transthoracic (lower third of stellate ganglia to T3) or lumbar (L2-L4) sympathectomy; patients were followed from 24 to 108 months after surgery; patients with unsuccessful surgical outcomes had significantly longer duration of symptoms before surgery (median, 36 months) than those with successful outcomes (median, 16 months); all seven patients (100%) who had sympathectomy within 12 months of injury, nine of 13 patients (69.2%) who had sympathectomy within 24 months of injury, and only four of nine patients (44.4%) who had sympathectomy after 24 months of injury obtained permanent (greater than 24 months) symptom relief; patient age, sex, occupation, site of injury, type of injury, presence of trophic changes, and duration of follow-up were not significantly related (P>0.05) to surgical outcome).

But once again, that article has to be seen against the backdrop of the time in which it was written. See, e.g., "Sympathectomy for reflex sympathetic dystrophy: factors affecting outcome," AbuRahma AF, Robinson PA, Powell M, Bastug D, Boland JP, Annals Vasc. Surg. 1994 Jul; 8(4): 372-9 (study included 12-year experience with chemical sympathetic blocks and surgical sympathectomies for causalgic pain of reflex sympathetic dystrophy (RSD) with emphasis on factors affecting clinical outcome; medical records of patients undergoing sympathectomies for causalgic pain were analyzed; patients were classified according to Drucker et al. as stage I, II, or III; results of chemical and surgical sympathectomies were analyzed using both univariate and multivariate methods; 21 patients had lumbar and seven had cervicodorsal sympathectomies for RSD; mean duration between initial injury and chemical sympathetic block was 10 months with a mean of 11.4 months to surgical sympathectomy; patients with stage II presentations were significantly more likely to have satisfactory early (92%) and late (79%) outcomes than stage III patients; patients with an excellent response to chemical sympathetic block were more likely to have satisfactory early and late surgical outcomes; multivariate analyses demonstrated that the most important independent factor in determining early and late satisfactory outcomes of sympathectomy was the time between injury and sympathectomy).

But by the time you get to his 2000 editorial in The New England Journal of Medicine, any reference in his writings to sympathectomies appears to have ended. Yet in much of the rest of the medical world, they were still the rage. Indeed, here's a discussion I downloaded today from the site maintained by the UCLA Dept. of Neurosurgery, in which they have the following (and quaint) discussion of the treatment of "causalgia":

How is causalgia diagnosed?

The initial step in diagnosis is a thorough history and physical examination. Physical examination is difficult to perform secondary to pain. The diagnostic procedure of choice is proof of complete or partial relief with a sympathetic block.

How is causalgia treated?

Medical therapy is usually ineffective.

Sympathetic block: 18-25% of patients have satisfactory long-lasting relief after a series of sympathetic blocks. Temporary regional blockade can be achieved by local anesthetic (e.g. lidocaine) injection of the stellate ganglion, the lumbar ganglia, or the celiac plexus. These procedures lead to sympathetic denervation of the head, neck and upper extremity, the lower extremity, and the abdominal region, respectively.

Surgical sympathectomy: Relieves pain in >90% of patients. Techniques used include anterior thoracic, thoracic endoscopy, percutaneous radiofrequency and supraclavicular. Sympathectomy has been reported to provide complete relief in over 80% and significant relief in 95% of patients with causalgia. Similar results have been obtained with reflex sympathetic dystrophy. The risk of significant complication is approximately 5%. These include a pneumothorax, intercostal neuralgia, spinal cord injury, and Horner's syndrome. [http://neurosurgery.ucla.edu/Diagnos...PainDis_1.html]

Vic's next assertion is that Dr. Schwartzman is on record as telling patients that ketamine works virtually 100% of the time. I was his patient and he certainly never told me that. In fact, in the CNN story, it says that ketamine works in approximately 50% of the cases. Who really takes issue with that? See, also, "Tackling depression with ketamine," NewScientist.com 20 January 2007 [free text available at http://www.lca-uk.org/lcaforum/viewt...7005e9e459b17]

Schwartzman's methods are not for the faint-hearted. He gives RSD sufferers doses of ketamine high enough to put them in a coma for five days, accompanied by anti-anxiety medications to reduce the nightmare of the k-hole. But for many, the results are worth it. In 14 cases out of 41, according to Schwartzman, patients were completely cured. "We haven't cured the original injury," he says, "but we have cured the RSD or kept it in remission. The RSD pain is gone."

"No one ever cured it before," he adds. "In 40 years, I have never seen anything like it. These are people who were disabled and in horrible pain. Most were completely incapacitated. They go back to work, back to school, and are doing everything they used to do. Most are on no medications at all. I have taken morphine pumps out of people. You turn off the pain and reset the whole system."

“In 40 years, I have never seen anything like it."

Vic also suggests, with respect to the principle study on the use of ketamine, to which I had previously made reference - "Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome," Correll GE, Maleki J, Gracely EJ, Muir JJ and Harbut RE, Pain Medicine 2004; 5:263-275 (in patients who underwent a second course of ketamine infusion, results indicated that 58% of the patients had relief for at least 1 year and that almost a third of the patients remained pain free beyond 3 years) - as follows:

. . . I read the study Mike wrote about, and I noticed that patients who had RSD less than six months had the really long periods of remission. Amazingly long.

Those patients who had been diagnosed more than three years previous showed more ambiguous results: mainly because someone forgot to do follow-ups on them.

This assertion is simply not borne out by a close reading of the study. (Also available on the RSDSA Medical Articles Archive page.) If you look at Table 1 on pp. 266-67 of the study, of the 8 out of 33 subjects for which there was an incomplete follow up, only 2 of those 8 had a CRPS history of greater than 8 months! What the study said, at pp. 270-271, is as follows:

In five patients the condition was fairly acute and of less than 1 month in duration. Nevertheless, it did appear to the physicians evaluating these patients that they indeed had early CRPS, as opposed to acute posttraumatic nociceptive pain. The patients were offered this alternative treatment and they recovered. We recognize that, in those five, patients the CRPS symptoms might have improved spontaneously.

It is impressive to note that the treatment has the potential of eliminating even the pain of those patients who have been suffering from the condition for several years, and not just more recently developed cases. In the case of Patient 25, CRPS was present for more than 20 years until it was completely suppressed with the ketamine infusion. This also points out the dynamic nature of the pain processing system and its long-lasting responsiveness to what appears to be neuromodulation therapy.

Finally, it should be borne in mind that the man has by no means reached the limit of his endurance with his work on ketamine, but remains in the forefront of work looking at the immunological aspects of this disease. See, e.g., "Changes in Cerebrospinal Fluid Levels of Pro-inflammatory Cytokines in CRPS," Alexander GM, van Rijn MA, van Hilten JJ, Perreault MJ, Schwartzman RJ, Pain 2005;116: 213-219, also available on the RSDSA Medical Articles Archive page.

I know I've covered a lot of ground and I appreciate the reader's patience. I've just tried, as best I could, to disabuse anyone of a notion that a guy who has probably done more - over the course of his long career - for the good of RSD patients than any other living individual is somehow a fraud and a huckster. And with that, I am done.

Mike

To Everyone,

Surgical Sympathectomies are done by Thoracic Vascular surgeons. They go to school for several years. I was offered a Sympathectomy last year. I had surgery on the nerves instead.

No Neurogists in the States as far as I have ever heard took a knife to the patient. Hugs, Roz

Is everything alright here?

I haven't read through all the posts but when one thread keeps popping to the top it gets noticed.

If we all realize that each of us will interpret or understand things a bit differently- we are all different people with differing life experiences.

I just don't want anyone to get hurt feelings - or increased stress over technical details and discussions or personal opinions on any doctor.

Dear Jo -

I think we're doing fine. There was just a little dust up over an issue of some long-standing, during the couse of which some assertions were raised that resulted in both sides asking the other to basically lay their cards on the table.

All between consenting adults.

Mike

...........................all between consenting adults??!


that sounds dodgy..............