NeuroTalk Support Groups - Ketamine coma referal?

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- - Ketamine coma referal? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/41562-ketamine-coma-referal.html)

Dear Judy -

I too am truly sorry for all you are going through. And in addition to clearly having a great deal of "resolve of character," you are also articulate and poised. (But I suspect that doesn't come as news.)

For what it's worth, I would have been about patient No. 20 or so in October 2004, before the German doctors confirmed that they meant what their forms said, and even well controlled "open angle" glaucoma was an abolute bar to treatment, where one's eyes apparently bulge out during the coma and they don't believe they can control the intraoccular pressures during that time period. The funny thing is, they were far less cautious about the level of impairment from RSD that was required before you got into the program, and based on Dr. Schwartzman's comments at the time, that must have been around the "tragic results" referred to in the People Magazine article.

Nevertheless, I think the establishment docs have it wrong when they say that 3 disasterous and then-some results out of less than a hundred make a procedure unreasonably dangerous. The better comparison, when you restrict the patient population to those already wheelchair bound, with "full body" cases (inside and out) is to risky surgery, that promises a 50% remission rate, with a level of "cures" at 30%. Compare that, for instance, to bypass surgery for those who have already lost > 30% of their heart tissure to an MI, and I suspect the ketamine coma stacks up quite favorably.

Your comments offer the greatest illumination - by far - on the overall status of high dose ketamine since I dropped out of that world, five years ago. Thank you.

That said, I was deeply concerned by your passing reference to "another tumor in the bone in my right knee" and hope it's well under control.

And as someone who has a monoclonal gamopathy of uncertain significance (MGUS), a necessary precursor to Multiple Myeloma (for the record, mine is a IgG-[lambda] with light chains) it's interesting that two totally different therapies - thalidomide and bisphosphonates, e.g., the pamidromates, including Zometa - and well perhaps as the newer "bisphosphonates alendronate," including Boniva and Fosamax, were first given as treatments to patients with MM only to find, quite by accident, that they relieved the RSD symptoms of some of the same patients. Perhaps it's as simple as the bisphosphonates are able to pull double duty because they have anti-imflammatory properties and their bone-binding actions make them "sticky" enough to provide six months or more of partial relief to deep, "bone crunching" pain, but I would prefer to think that something more subtle is in play, even if a PubMed search of "Multiple Myeloma CRPS" brings up nothing beyond the dual uses of these drugs.

Granted it could all be a coincidence, but it's gotten my attention, even as my insurance company has decided that it will no longer cover the Zometa infusions. :( Have you by chance used that class of meds, either for CRPS or your ortho issues?

Thanks again for illuminating the current state of high dose ketamine. To say nothing of your implicit comparison between Drs. K and S. And speaking of lidocaine, I've felt for years that a guy who would make a special trip into the hospital to oversee my Saturday discharge and meet with my wife and me following a failed 5-day lidocaine infusion that had run over - because my peripheral veins had collapsed to the point that they couldn't accommodate a 3-line iv and I had to wait almost 24 hours for surgeons to install a central line through my chest wall in those pre-PICC days - was at heart a deeply compassionate physician, notwithstanding all of attacks that were piled upon him in this board, well before you joined us. Your comments have served to underscore that view.

Mike

Quote:

Originally Posted by jhtpfan (Post 550424)

Dear MsL,
I"m not really familiar with the Swiss system, but thank you for the head's up on it, I will definitely look into it. As for the boosters I got in Germany, they are not general protocol. I didn't get them the first time, partly b/c I had just gotten more Ketamine than they had every given b/c the coma ended up being three weeks. Also, I woke up in complete remission. The reason I got them in Germany the second time is b/c when I woke up, I was getting tremors and spasms in my left arm and shoulder. Dr. Rohr put me on a high dose of Lyrica to continue for six months. He also did a few boosters to try to enhance what was done by the coma. The protocol for the German coma is that when you get home, you have to do follow up boosters with Dr. Schwartzman. Generally speaking, since it sometimes differs depending on how you're doing, withing two weeks of coming home, you get two boosters in a row. The two weeks later you get another two in a row. Then a month later, the same and as long as you are still in remission, three months later you get your final two boosters. If you are having no RSD symptoms, you are then released from the Ketamine program. If something happens, like the girl I went with for the first coma, a little after a year from the coma, she was pushed at a concert and sprained her ankle. She had no return of RSD symptoms, but as a preemptive strike, they brought her back for two boosters. This October, she'll be two years in remission. She is the ideal outcome of the treatment. They say that 50% of the patients go into remission and of that, 30% hold the cure.
Unfortunately, the success rate in Mexico is lower, but that's b/c Dr. Kirkpatrick doesn't really do follow up. He offers boosters to his patients, but they're really expensive and he doesn't tell them, that it's needed to boost your nervous system and enhance the effects of the coma.
As for my situation, I have had to continue with the boosters, but have also had issues with that b/c my LFT's (liver enzymes) went up dramatically after the first coma. I was not able to get Ketamine after December (I had the coma in October). I had to wait till June to get Ketamine for a week in-patient but it was only b/c the treatment I went in for backfired. I then ended up back in the hospital b/c the RSD spread into my digestive system and I couldn't eat or hold any food down. The ran a bunch of tests and kept in the hospital for two weeks checking things out. They gave me Ketamine with the endoscopy and that helped to keep the RSD from flaring up even more. They also did a Trans-jugular liver biopsy which I needed to go back to Germany. After the second coma, I just had the spasms and tremors in my upper left side of my body and minimal amounts of pain. I was going every couple of weeks for Ketamine and was not on any meds except the Lyrica. I was at rehab and the gym 3 days a week for eight hours each day. I was starting to really build up a lot of muscle and was able to ride my bike for the first time in 8yrs and shoot and dribble a basketball for the first time in 7yrs. I was a varsity b-ball player and was looking into playing in college, but that's when the RSD started spreading. I also was able to go to a club and dance for the first time in almost 2yrs, and I did it in stiletto heels and had no pain from it. I was a theatre and dance major in college, so it was really big for me. I'll never be able to dance at a competitive level again, but as I'm sure you are aware, to be able to do something you love and have not been able to do, even if you suck royally, it feels amazing.
Unfortunately, three months after the second coma, they found another tumor in the bone in my right knee. They had to take out the bone and do bone graphs. I was in the hospital for nine days getting Ketamine, but unfortunately as soon as they turned it off, the RSD raged out of control again. I was in a rehab hospital for 2 weeks and have been in a wheelchair for 4 months now. I live in our living room where my hospital bed is. I have a PIC line and have to administer IV medications throughout the day and night.
As I always have and as I'm sure you have as well, I will fight this disease till the last breath I take in order to get my life back. I have no idea what lies ahead for me, but I have had a taste of what it is to live some semblance of a normal life and I won't stop until I get it back. I imagine you are the same, you can tell that you have a fighting spirit from the way you talk (by the way, that's a compliment with nothing but sincerity). Hold on to that, it is the most crucial tool you'll ever have when fighting this disease.
As for high dose boosters, you can get anywhere up to 1,000 mg infusions over a three-four hour infusion. Sometimes, they do 1 or 2 gram boosters, at least they do in Mexico, but I'm not positive about Germany.

Sorry this was so long, I just wanted to answer all of your questions to the best of my ability. I truly hope that you have found treatments in Canada that have helped you or that you haven't tried yet that have the potential to really help you find relief. I will continue to keep you in my prayers and look forward to the continuation of sharing our experiences and information. I will also look into the Swiss system.
~Judy

I have just been in to see Kirkpatrick and he said I would be a good candidate for the coma is Mexico. Quite frankly, it scares me quite a bit. I tried the 3 day 4 hour escalating infusion and have very little benefit. Can you tell me some about your experience with the coma. Thanks for your help.

were you helped by the comas,

Quote:

Originally Posted by jhtpfan (Post 549699)

Sandra,
The info on Dr. Schwartzman and Dr. Kirkpatrick is accurate to some degree. The coma in Germany is done in Saarbreucken at the Klinikum Saarbreucken. The piece however that is missing is that the program in Germany is temporarily on hold. They are talking about restarting, but so far that has not happened. I've had the coma twice and the second time, I was the last person to be put into a coma before the shut down the program. As for Dr. K, he is the one to go through to get the treatment in Monterrey, Mexico. Dr. Cantu is the doctor in charge in Mexico. I don't know about Dr. K b/c I've never seen him, but Dr. S has about a three to four year waiting list for appointments and a two year waiting list for the coma. As far as costs, you need at least $30,000-40,000 expendable money and then you need another $10,000-15,000 in credit. I'm not sure on the exact costs of Mexico. The first time I went, we spent $80,000 but that was b/c I got staff infection pneumonia and was in a coma for 3 weeks, so we were there for a month and a half. As for the second time, I was in and out of the hospital in less that two weeks and I arrived home only three weeks after I had left and it cost us $60,000. If you need any further info, feel free to let me know.

Hi, were you helped by the comas, thank God you survived the first one. Did you see the people mag. article?? did you have the second coma in Germany also. ? thank you for sharing. cz

How did the treatments go?

Soo... how did your treatments go? How is your pain now?

Ketamine IS done in the states and successfully!

Quote:

Originally Posted by Sandel (Post 239769)

Hi there..
Does anyone know how a Canadian would go about getting ketamine coma treatments in either Mexico or Germany.. who would we need to be refered to first etc..
Thank you so much for any advice you can give on this subject.
Sandra

I ended up in the ER 3 weeks ago two nights in a row with pain so bad I seriously wanted them to amputate the foot and I would take my chances with phatom pains. Fortunately, a procedure we'd been researching for two years and begging to get into the trials of, was recommended to us in the ER (timing's everything, huh?). It's a Kedamine induced coma. I was placed in a coma for about two days while they introduced the Kedamine to my system as well as performing a rapid detoxification of my system. I never realized that pain medicines can eventually turn against you and cause you even more pain. I won't lie to you. There are side effects such as short term memory loss (I don't remember the entire week before I went into the hospital), some holes in long term memory, vision impairment and some dexterity issues. Most of these are short term and you'll get them back. The only thing hanging over me now is the loss of memory, which is certainly a rather odd feeling. The good news is however controversial this treatment may be, I am currently in remission with about 90% of my pain gone. I am walking for the first time in two years without a cane. I HIGHLY recommend looking into this procedure. It scared the hell out of me, but I am so happy to be without pain for as long as this will last. Take comfort in knowing that this disease is one of the most studied diseases at the moment and many new trials are be conducted all over the States. Doctor Ian Black brought the treatment to Vermont from Texas and I was the third person to ever have it done here. I hope some of this help you and you'll be in our prayers. God Bless.

General

You had coma treatment in the U.S.? If so that's a good thing because not long ago it was prohibited by the federal government for this procedure to be performed in the States. Two days under may be the reason its changed or it could be the State telling the fed to bug off, perhaps.
Congratulations on the 90% reduction in pain, you must feel like you've been born again, I'm sure! :):)

Quote:

Originally Posted by Sandel (Post 239769)

Sandel, I joined this board for a single reason.... to let people know that I just went through a two day Ketamine Coma IN THE U.S.!!! I not only went thru it but I am enjoying 90-95% pain relief. They also conducted a rapid detox which is double the good news. I still have anxiety because I know there is no cure yet and this could crop up again, but I am seeing someone to deal with that fire and am grateful for every pain free day. I'm not going to lie to you. When I "woke up" I was confused and scared as hell. I thought I'd died and was in hell until I heard my wife's voice. She stayed with me for four days more in the hospital while I regained my strength. These procedures WILL beat you up! I am 6' and weighed 245 when I went into the hospital. A week later I cam out 30lbs lighter. WOW, I was weak and am still regaining my strength two weeks later. But I am also pain free. An even trade in my book. Actually... I got the better deal. Pain free with zero opiates in my system! Keep up your search and don't take no for an answer. If I had it done, it CAN be done. Good luck. My prayers are with both all my RSD brethren and my brothers and sisters overseas in harms way. God Bless and Peace.

General
USAF SMS Retired