CNN Report - Has everyone seen this?
 

Just came across this online....Thought there might be some interested in watching it.

http://www.rsdfoundation.org/en/CNN_RSD.htm

Thank you
 

Thank you so much for your kind words....It's not easy having a loved one who is suffering with this condition. I have good days and bad days too. This morning I was frustrated about his pillows being all over the living-room. (He has at least 3 for each arm) - they make such a mess when he's not in the recliner.....BUT I know he needs them so I restack them on his chair until he's back in it again...little things like that occasionally urk me - I'm only human and do try my best, I just need to remember what their for and who they are for.

I get angry too - Angry because in the time since the RSD in his leg (1995) and now in his arm (2006) 11 YEARS have gone by with no major advancement towards major pain relief and/or recovery. Angry, because his employers didnt care enough when asked for ergo for the drivers arms told my husband and the crew to "buy their own" (on a minimul salary), Angry because his employers have not accepted responsibility for his condition which thus caused the surgery and thus caused the RSD - Angry because the W/C insurance company has denied responsibility there for cutting him off medically and financially - Angry because the "system" does nothing to protect injured workers, their families, and there is no financial security net for someone who developes a serious medical condition. (AKA - Social Security = Slooooocial Security) - People starve and die waiting for an income and treatment......And the list could go on.....I try to harness that anger tho and research, share information, spread the word about RSD, contact elected officials, etc. I have not made progress by leaps and bounds but for each little "bug" I put in ones head I feel I've accomplished something.

Your right - this disease does destroy not only relationships meaning husband/wife and/or partner but also relationships between children and parent....Our oldest remembers dealing with the RSD and dads leg and how it has limited him (no tackle football, no bike rides, skiing, etc)...now he's dealing with dads arm as well and he's angry. He's had so much lost and had his life with his father taken away from him. We were talking about this just the other night....It's extremely hard on him, he's had to take on the role of caregiver, doing "dads jobs", helping more then normal with his siblings, etc. It's a lot of pressure for a teenager...or rather any child.

Our two youngest are struggling with this as well. I used to be home with them all the time while dad was the financial provider. Well no more....I am now working (which is a hard adjustment for them all) and dad is at home. This has thrown them for a loop. Right now my hours have been cut (poor weather for a tourist area and the economy in general) so I have been home a few weekdays and the kids are liking that. I feel somedays as the mom (who always said she'd be home and there for her kids no matter how poor we were) like I've abandoned them - I feel guilty because I'm not here for them. Dad is, I know, but it's still hard - I've been home with them all their lives. Now I cant watch them get on the bus, tell them " Have a good day & I love you" before they head off to school, or brush my daughters hair in the mornings....

One thing I'd like to add, before I close as I've worked my way to tears writing this - is that please - for those of you that suffer from RSD remember to give thanks to your care-giver and to your families. Let them know you appreciate all they do for you and that you need them and appreciate their support. One kind word every day can make the difference in all of our lives. Be their shoulder to cry on if need be - Sometimes they need that reassurance too.

I think many of the feelings and issues you mention- fit so well for anyone in a caretaker role.

It is very hard for the 'healthy" one or family members to really comprehend what the afflicted ones go thru but on the flip side care taking and supporting and working do take a heavy toll too.

In essence both have "lost" the "normal" life and both will go thru the grief steps and at a differing pace.

even for those with 'functional" disabilities- that can still do some normal activities it sometimes is hard for others to understand.
We can do some things/activities and other times aren't able to due pain or that the activity will cause a flare that may last for a week.

Good post !

caregivers are more than welcome to vent here too-:grouphug:

Oh I haft to agree with you hubbywith rsd I have been through the work comp system. I could not even go back to my job I was to high risk so here I am a burden to everyone my town and family. I receive SSDI and Medicare to help me now when I was fighting them for my rights I could not do it alone, being a single mother I needed income so I had to take their offer which did not help me then or now.
I thank the help I get everyday from my neighbor and from my church and the town I live in, I know I’m just a charity case I feel so helpless and just want to give up all hope why should I be a burden to them anymore…Lil

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 :rolleyes:

I just have to say, for the record, that there are a lot of together people on this forum who are entirely supportive of the work of Robert Schwartzman, M.D.

I know "Kit Deluca" personally. I do not believe that she holds the views that Vicc would ascribe to her. Indeed, the CNN piece correctly states that the ketamine treatment coma has helped roughly 50% of the people who have had it. And yes, I was one of those many people who were told by Dr. Schwartzman that he could and would “cure me” when it didn’t pan out that way, but I don’t hold it against him. The fact was that I wasn’t an ideal candidate for the treatment, simple as that. But it doesn’t negate the underlying and evolving science.

I know that some feel otherwise, and that's their right, but this forum should NOT be understood to be a place that supports a unitary view that Dr. Schwartzman is a snake oil salesman.

There is a lot of science out there about the role of ketamine, not only as an NDMA receptor antagonist, but, in the piece posted by Roz earlier today, a drug that actually suppresses the production of pro-inflammatory immunological proteins that would otherwise develop immediately after surgery. See, http://neurotalk.psychcentral.com/sh...ad.php?t=13236 (Pretty amazing when you look at it that way, isn't it?)

Indeed, if you pay attention to the CNN piece, they are talking not just about ketamine, but other immunologically based treatments that were coming down the pike. I have seen absolutely nothing in the intervening half-year that contradicts that view.

Finally, I know that there is a view out there that hold that “I’ll stick with stuff I can understand.” I’ve got to say, coming at this from the perspective of someone who satisfied his science requirements in college by taking Intro Bio, Ecology and Astronomy (Space Rocks for Jocks), that it behooves each and every one of us to do the heavy lifting ourselves, because our doctors may not feel obliged to do it for us. Go out and buy Molecular Biology made simple and fun, D.P. Clark and L.D. Russell (Cache River Press, 2000) or Clinical Physiology made ridiculously simple, Stephen Goldberg, M.D., (MedMaster, Inc. 2004), and then start digging!

See you in the stacks.

Mike

Oh gosh, I remember Kit's description of her experience (actually someone else posted for her at the beginning of that ordeal) - what a nightmare, put me off ketamine coma (I stress coma) treatment for ever :eek:

I read Vic's post as ascribing his views to himself, actually. Do we have to have a "unitary view" here, can't we have amiable disagreements? I suspect quite a few of us might be bright enough to make up our own minds about things, and we might even be bright enough to understand science articles too!
all the best :)

Artist –

I never ever meant to suggest people didn't believe that they weren't thinking for themselves, so much that I just believe folks are making a mistake in ascribing to someone I had the privilege of meeting in a professional relationship (Robert J. Schwartzman) all of the sins, real or imaginary of the medical community.

And for that matter, who among us hasn't labored in an occupation for a good number of years where our professional views haven't changed over time? Yet what's going on here is that stuff is being pulled out against a man, as though every position he took over God knows how many years is being held against him as though it was yesterday, and then others are coming along and piling on him like he's the Anti-Christ.

Frankly, and at the risk of alienating some, I am at times left with the imagery of a bunch of town folk, storming the castle with torches and pitchforks. Let's see, if Schwartzman is Dr. Frankenstein, does that make me his monster?

Mike

Hey Mike,

Please take this as the joke it's intended to be....no! maybe if his treatment had been successful you would be, but as it wasn't....you remain completely unmonstered (I now have a picture of Dr. S in a crypt surrounded by giant crackling electric coils :D).
all the best!

Wow - I didnt post the article to start the war of the words....Just thought that the information was interesting and hope for some of us. At least SOMEONE is doing something.

Honestly - I dont think the "coma" is way off track....I personally know someone who had RSD who ended up very sick (from another sickness) - they had to put them into an induced coma like state to keep them from hurting themselves (severe infection raging in their body) and after they came out of it slowly progressed in the right direction and their RSD went into a remission of a sort. The RSD was not gone - as with the girl in the video but more managable....We never gave it much thought as to why that could have been before seeing that video but now it makes a little sense...

Maybe there is something to this........

To Everyone,

I 100% believe that DR. S heart is totally right. He is in his 70's the last thing he needs is money. He has money. He is devoted. He wants his patients out of wheel chairs and off of drugs. Which the Ketamine has done in several cases.

He has several patients coming into his office with this horrid RSD pain. RSD is a very rough DX.

Ketamine is not as bad as going under general. My husband has spoken to quite a few Anesthesialogists. Which I have considered Ketamine and might end up doing it myself.

I want to get the point across that DR. S is not the only one that believes in Ketamine treatment.

25,000 thousand is nothing to be having to be checked on and continually monitored for 5 days if not more. Do you or anyone else have a clue what it costs to monitored and be hospitalized.

Anesthesialogists, make big bucks anyway let alone for them to have to check on a patient for 5 days if not more. 25,000 is peanuts to them, IT REALLY IS. They can make that in surgery in a day and a half. Hugs, Roz

To Vicc,

Let's recall Duke. Who is a surgeon and put his 12 year old thru Ketamine. Only to give her some of her life back.

Today she is happy and riding her horse. Do you recall the photo on Brain Talk 1. Hugs, Roz

what's in a name....
 

I don't think anyone disputes that ketamine is important and often effective in treating chronic pain (treating, not curing). But there is a big difference between subanesthetic "ketamine treatment", and anesthetic "ketamine coma treatment". This article from Neurology Today may help forum members to see the difference - it's long, very readable and seems to me to be unbiased :).

It's middle of my night here, just woke up (with hiccups!), now off back to bed.
all the best!

http://www.rsdfoundation.org/en/NeurologyToday.html

Neurology Today:
Volume 6(3) 7 February 2006 pp 1,17-19 TWO APPROACHES TO KETAMINE MOVE FORWARD FOR COMPLEX REGIONAL PAIN
Hurley, Dan

Two approaches to using ketamine to treat the complex regional pain syndrome (CRPS) - one employing anesthetic doses, the other subanesthetic - both show promise despite the risks associated with prolonged administration of the drug, researchers say.

Neither technique has yet been validated in a randomized, or even an open prospective trial; indeed, the more extreme of the two approaches, using ketamine to induce a coma, has not been published in a peer-reviewed journal. What's more, the senior researchers involved in the two approaches are unwilling to vouch support for the others' techniques.

Yet both research teams have ardent supporters; both are reporting dramatic progress in treating the otherwise intractable condition; both believe their technique works by disrupting central sensitization of pain transmission neurons, which they see as key to the disorder; and both have followed fascinating paths to investigate new uses for an old drug.

This drug has a bad reputation, far in excess of truth, because of how it was initially used, where terrible hallucinations and emergence reactions were associated with it, said Rodney E. Willoughby, Jr., MD, Associate Professor of Pediatrics at the Medical College of Wisconsin in Milwaukee. I can attest to how leery people are of this drug, even for an infection that is otherwise one hundred percent fatal.

INDUCED COMA FOR RABIES

Dr. Willoughby gained international attention last year after he treated a 15-year-old girl who had unwittingly contracted rabies from the bite of an infected bat and had not been vaccinated. With no other known treatment, he and colleagues quickly opted to induce a coma with ketamine because the drug had shown neuroprotective and anti-viral effects against rabies in animal studies, and because much of the destructive effects of the infection are due to disordered brain function, rather than pathophysiologic destruction. The girl became the first known survivor of rabies without receiving a vaccine (N Eng J Med 2005;352:2508-2514).

In his view, Dr. Willoughby said in an interview, The ability of anesthesiologists and other experts to use this drug safely with good outcome cannot be disputed.

What is disputed, however, is the extent to which the two ketamine regimens being tested for the pain syndrome will prove most effective with the least side effects.

CRPS (type 1 was formerly known as reflex sympathetic dystrophy, or RSD) is a chronic pain condition, which typically occurs out of proportion to the severity of local traumatic injury, and worsens rather than improves with time. The pain usually affects one limb with dramatic changes in color and temperature of the skin, intense burning sensation, skin sensitivity, sweating and swelling.

The coma-induction regimen grew out of work by German researchers who had previously used ketamine to treat phantom-limb pain syndrome, said Robert J. Schwartzman, MD, Chairman of Neurology at Drexel University School of Medicine in Philadelphia. He has co-authored two meeting abstracts on the approach and championed it in the lay press.

One of the German doctors had a relative with RSD that was not responding to [any other] treatment so he tried the [ketamine-induced coma] treatment and it worked, Dr. Schwartzman said.

(Dr. Willoughby said he understood that the German team's discovery was in fact a chance finding involving a patient with pre-existing CRPS who suffered severe trauma in a car accident. They had to induce a coma to protect the brain, Dr. Willoughby said. When they brought the patient out of the coma, the chronic pain was gone. It had nothing to do with theory. It was an incidental observation.)

In any case, once the German team became confident enough in the new approach to begin talking about it informally at international meetings, Dr. Schwartzman began referring patients who had tried and failed every other treatment.

KETAMINE TREATMENT REGIMEN

To date, he said, 30 patients have been treated by the German physicians, led by Ralph-Thomas Kiefer, MD, and Peter Rohr, MD, of Eberhard-Karls University in the city of Tuebingen. Treatment is initiated by bolus injections of ketamine (0.5 mg/kg) and midazolam (2.5-5 mg) until deep sedation is reached. Therapy is maintained with infusions of ketamine (3-7 mg/kg/h) and midazolam (0.15-0.3 mg/kg/h) over five days. On the fifth day infusions are slowly tapered.

So far, nine of the 30 patients have experienced complete and permanent remission from their previously intransigent symptoms, Dr. Schwartzman said. Of the remaining 21 patients, all of whom had at least a partial remission, seven were entirely pain-free for six to seven months, after which the pain slowly returned, he said. Ten of the patients are now being treated by Dr. Schwartzman with subanesthetic doses of ketamine in an attempt to boost the initial effect.

Side effects, Dr. Schwartzman said, have been minimal. Patients do experience hallucinations, he said. We try to prevent this by giving the patient midazolam and clonidine when they are in a coma. Some patients have experienced weight loss, abnormal appetite, and abnormal sweating for up to a month. There have been no severe complications. Pneumonia developed in five of the 30 patients, and kidney infections in six, but all responded to treatment. Detailed psychological tests performed in 15 of the 30 patients before and after treatment have shown no change of mental function, he added.

A paper he has co-authored with the German researchers on their results has been rejected by one journal and submitted to another, Dr. Schwartzman said. We're going to have a hell of a time getting it published, he said. The journal editors want a double-blind controlled series. You can't do that with coma.

FIRST US STUDY APPROVED

Although he has not yet employed the procedure himself, Dr. Schwartzman will be collaborating on the first US study of the technique, which has just been approved by the institutional review board at Tampa General Hospital in Florida. The study will be led by Anthony F. Kirkpatrick, MD, Assistant Professor of Internal Medicine and Director of the Pain Management Center at the University of South Florida in Tampa.

I see between 200 and 300 new patients with RSD each year, Dr. Kirkpatrick said. I probably see more than anybody else in the world now. I've referred so many patients for the treatment in Germany that it reached a point where I had to prove it to myself, using our standards of scientific proof.

The study will involve up to 10 patients with advanced disease that affects multiple limbs, and is progressing despite other treatments. Three patients will initially be treated with ketamine-induced coma, after which a safety monitoring board will review the results.

If the safety factors look acceptable, said Dr. Kirkpatrick, we'll do seven more. The cost to each patient will be $25,000, slightly less than the estimated $30,000 in total costs for patients traveling to Germany, he said.

CASE REPORTS: SUBANESTHETIC APPROACH

As for the alternative subanesthetic approach to using ketamine for CRPS, the first peer-reviewed report of a single case study was written by Ronald E. Harbut, MD, PhD, June 2002 in Pain Medicine (3:147-155) with a remarkable editor's introduction: This report of a single case study is presented in unusual detail because of the exceptional promise of the technique described, and the importance of further study.

The treatment was built on the pioneering work of Graeme E. Correll, MBBS, a Fellow of the Australian and New Zealand College of Anaesthetists [sic]. Having begun his career as an anesthesiologist in remote jungle villages of Papua-New Guinea, where medical resources were scarce, Dr. Correll relied on low-dose intravenous ketamine as an analgesic, and became well versed in carefully titrating it to avoid the hallucinations typically associated with higher doses. Upon moving to the more developed community of Mackay, Australia, he found the low-dose ketamine to be useful for patients with chronic pain that had been unresponsive to other treatments.

Eventually, Dr. Correll's work came to the attention of Dr. Harbut while he was working in Mackay on an assignment as a visiting anesthesiologist from the United States. After returning to the US, Dr. Harbut developed a treatment protocol in 2002 while at the Mayo Clinic in Scottsdale, AZ. He is now Director of the Neuropathic Pain Treatment Center and Assistant Professor in Anesthesiology and Pain Medicine at the Milton S. Hershey Medical Center in Pennsylvania. Following Dr. Correll's method, Dr. Harbut treated a 44-year-old woman with a nine-year history of intolerable CRPS that left her all but home-bound and using a cane. Treatment began with 10 mg/hr of ketamine, increased by 10 mg/hr every two hours to a maximum of 30 mg/hr, and was maintained for six days, by which time the patient's pain had completely disappeared and she had tapered off her sustained-release oxycodone by 50 percent, which was completely discontinued at one month.

A second report, co-authored by Dr. Correll, Dr. Harbut, and others, followed 15 months later in Pain Medicine (2004;5:263-275) describing the case notes of 33 patients previously treated by Dr. Correll and colleagues in Australia. They initially achieved complete pain relief in 25 (76 percent) of the patients, partial relief in six (18 percent), and no relief in two (6 percent) patients. The relief lasted at least three months in 54 percent of the patients, and at least six months in 31 percent. Twelve of the patients received a second round of the ketamine after the initial treatment, and all 12 experienced complete relief of their CRPS pain initially, including four who remained pain free for over three years.

Dr. Harbut likened ketamine therapy to the healing of a broken bone. If someone breaks a bone and you simply put the two pieces back rogether, they won't immediately heal. However, if you add a splint and hold the bones juxtaposed and steady for a period of time, and take away the splint later, the bone is healed. I think that the ketamine treatment does something similar; it lends support and allows the abnormally sensitized nerve cells to heal themselves, so that when you finally take away the ketamine, the pain is reduced or gone.

This second report stood out with the addition of a black-box warning at the end, which noted that recent animal studies had found dose-dependent neurotoxic reactions in the cingulate or retrosplenial cortices of adult rats given the drugs phencyclidine and MK-801 which, like ketamine, are NMDA (N-methyl-D-aspartate) antagonists. Treatment with the drugs for 24 to 96 hours resulted in irreversible neuronal degeneration and death in the retrosplenial cortex and other certain regions of the adult rat brain, the warning noted. But this effect, as well as the previously known psychomimetic and cardiostimulatory side effects of NMDA antagonists, appeared preventable with alpha-2-adrenergic agonists, such as clonidine, guanabenz, or dexmedetomidine. As a result, the authors recommended that suitable neuroprotective agents be included whenever ketamine infusion therapy is undertaken for the purpose of treating CRPS.

Clonidine has become the agent of choice for preventing the potential complications of ketamine, according to Dr. Harbut. Drs. Harbut and Schwartzman agree on the need to treat CRPS by disrupting central sensitization through the blockade of NMDA receptors.

The original injury to a peripheral nerve causes central sensitization of pain transmission neurons, said Dr. Schwartzman. The bottom line is that the body's pain cells become hyper-activated.

But they part ways on how to use ketamine. Subanesthetic doses help but do not cure patients, Dr. Schwartzman said. Only the anesthetic doses have cured patients. We have done subanesthetic doses in 100 patients without a cure.

Dr. Harbut would not comment on the use of ketamine to induce coma, but said of his subanesthetic approach, I believe this area of work is going to become and stay extremely exciting for years to come, because of the relief it has and will bring to care for intractable CRPS. The difference between a cure versus remission is how long the relief lasts after treatment.

Clearly, not all patients with CRPS treated with subanesthetic ketamine respond with meaningful or lasting relief. On the other hand, some patients do respond well. The longest remission we have seen thus far has been about three years.

Perhaps surprisingly, Dr. Willoughby, who successfully used ketamine to induce a coma in the rabies case, expressed reservations about Dr. Schwartzman's approach. While complete remission in nine out of 30 patients would be a slam dunk if confirmed, he said, the published results with the subanesthetic approach look almost as impressive. The question then is why you have to push it that far, he said.

But two neuro-intensivists said they thought that ketamine-induced coma sounded like a reasonable approach worth further testing.

It could seem crazy to a neurologist who is not used to practicing in a critical care environment, who is not used to using ketamine as adjunctive pain medicine, said Claude Hemphill, MD, Associate Professor of Neurology at the University of California-San Francisco, and Director of Neuro-critical care at San Francisco General Hospital. In the neuro-intensive care unit (NICU), he said, Treating pain with large doses of sedative agents is an everyday thing. They might even end up on the ventilator for a week as they're deeply sedated to coma or near coma. So I don't think it's a priori unethical to put someone in a coma just because they're in severe pain and not critically ill. If they have disabling pain, that's fair to consider.

Neuro-intensivist Stephan A. Mayer, MD, Associate Professor of Clinical Neurology and Neurosurgery at Columbia University School of Medicine and Director of the medical center's NICU, supports the underlying theory of using a pain holiday to achieve long-term remission.

The more pain you're in, the more pain you're in, said Dr. Mayer. The pain-sensitive structures in your brain become irritated and hyper-sensitized. It becomes this vicious cycle. What Schwartzman may be doing is breaking a vicious self-propagating cycle of pain, through analgesic sedation. If in fact it really works, it's of interest because it provides insight into the very nature of chronic pain.

He drew a parallel between the experimental method for treating CRPS and an established treatment for status epilepticus. These are seizures that repeatedly hammer the brain and don't stop, Dr. Mayer said. You get stuck in this self-propagating nightmare. What we find in neuro-intensive care is the only thing that will work is a definitive seizure holiday. We put the patient under anesthetic-level sedation for a day or two days, or sometimes a week.

What no one disputes is the need for an effective remedy for CRPS. These patients get morphine, dorsal column stimulators - none of it works, said Dr. Schwartzman. As a result, I've got a three-year waiting list. That's bizarre. There are thousands and thousands of these patients.

Ultimately, we all want to find a way to improve the quality of life of those who suffer with intractable and intolerable CRPS, Dr. Harbut said. Although the early findings are optimistic, more work is needed to further establish the safety and efficacy of this novel approach.

ARTICLE IN BRIEF
Two teams of investigators are reporting dramatic progress in treating chronic regional pain syndrome - one group with anesthetic doses of ketamine, the other with subanesthetic doses of the agent.

REFERENCE
Willoughby RE, Tieves KS, Rupprecht CE, et al. Survival after treatment of rabies with induction of coma. N Eng J Med 2005;352:2508-2514.

Correll GE, Maleki J, Harbut RE, et al. Subanesthetic ketamine infusion therapy: A retrospective analysis of a novel therapeutic approach to complex regional pain syndrome. Pain Medicine 2004;5:263-275.

Harbut RE, Correll GE, Successful treatment of a nine-year case of complex regional pain syndrome type-I (reflex sympathetic dystrophy) with intravenous ketamine-infusion therapy in a warfarin-anticoagulated adult female patient. Pain Medicine 2002;3:147-155.

IMPORTANT NOTE: The author, Dan Hurley, acknowledges that the following inaccuracies were inadvertently included in the report: 1. Pneumonia developed in 8 of 30 subjects, not in 5 of 30 as stated. 2. Tampa General Hospital is requiring a down payment of $27,000, not $25,000. This hospital charge does not include consultation services. However, physicians in critical care and in the clinical laboratory have agreed not to charge research subjects for their services. 3. The article states that Tampa General Hospital has approved the study. However, the article does not mention that approval by the IRB for the University of South Florida is still pending.

Dear Vicc,
Both Mike and myself care very deeply aboout Kit. WE REALLY DO.

I beg of you to please stop this. We are blessed to have Mike here.

He is beyond a asset. Roz

All can say is that I have been on ketamine for the last 14 months. It has NOT cured me... it has not MAGICALLY made me better. BUT...... it has given me some quality of life back - which I personally think is good.

I am tried EVERY medication out there - I have taken methdone, fentanyl, pethidine, morphine, oxycodone (I know it's similar to morphine - but slightly different too), calcium channel blocks, sleeping tablets, anti epileptics, anti depressants, muscle relaxants, blood pressure meds (to allow more blood to my extremeities), botox, epidurals, sympathetic blocks, had a sympathectomy...

Ketamine has been the most successful pain killer I have had. MY pain never drops below a nine - but I can now move around, I can get out of bed, I am not crying all day and all night. The last 14 months have seen me go from someone that didn't go out or do anything but cry and work to someone that can now eat, attend university full time, and have a social life. To be honest, I don't CARE how it works....as long as it does.

I really don't feel that we should be arguing between us - I know we are always going to have individual thoughts on RSD and how it should be treated, I just feel that we should all remeber we are fighting for the same thing - a treatment that WORKS, doctors that UNDERSTAND US, and the under lyng physiology that leads to the development of RSD. There are so few of us already, we can't dilute what we are aiming for by fighting between ourselves...

To steal a very corny phrase "It's all for one and one for all".. Also, all of us are ratty (and I mean ALL OF US) from too much pain, no sleep and just total eughiness... we are all going to take things personally - I know I do - I have been reminded by several people on this forum that when people go on about wheelchair use they are not dissing people who have to use them... it's something i have a very thin skin on

Rxxxxxxxxxxxxxxxxxxxxx

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.

:grouphug:

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..............