I'm Canadian and I I just self referred by contacting the doctors in Germany directly. I used the the emails on the study publications. I went to Saarbreucken to meet with Dr. Rohr for a consultation while on vacation in Europe a few years ago.

MsL

Hi Marleen,
There was a Ketamine study done here in Scottsdale at the Mayo Clinic on Mayo Blvd and 56th Street. Dr.S , Dr. Harbut, Dr. Correll, and 2 or 3 more Drs. were involveed. It wasn't a Coma however. This was several years ago, at least 10 years. One of my friends was their assistant. I believe there was a German Dr. and one from Australia involved. Dr. S and I believe Dr. Harbut went to Page Arizona and worked at a clinic before going to Philly. The Mayo does not do the Ketamine treatment. I called them a couple of months ago and they have one Dr. working on RSD if it is in the Foot and no spread. If anyone needs the information, I can call my friend who worked with the Drs. or I have another friend that works in Administration at that clinic. We have two Mayo clinics here.
That is a lot of $. The thought of a coma is too scary for me. But I know there are different levels of pain. It's not a good position to be in, that's for sure. Hope today you are in a low pain day. Your friend across the pond, loretta

I can't speak on behalf of the program in Mexico, but in Germany they charge that much because sometimes things go wrong. My first time I got Staff Infection Pneumonia and was in a coma for three weeks. I was in the hospital for 5 weeks. They lost a lot of money on me and the other girl I was there with who was in the coma for two weeks. When you go there, you sign a contract to pay 15,000 or 18,000 (which is what it went up to after we left). If you are only in the hospital for just under two weeks like I was the second time I went, or the five weeks I was the first time, the cost never changes. They sign the same contract that we have to sign that says no matter what happens, the cost never increases. Again, I don't know about Mexico. You have to understand that in Germany, they started doing this treatment in 1999 and have put less than 60 people into comas. The don't take every month, sometimes they only take four months out of the year. The hospital that it's done in, takes on a lot of risk if something goes wrong, so the only thing that funds this project is the money you pay. Unfortunately, you also have to pay room and board for whoever goes with you and all the extra costs of being away from home.
That being said, not one single German resident has had nor will ever have this treatment done on them b/c they have universal health care and the government does not want to have to pay for it. I think that's why it's still considered "experimental". As for a study, before you go to Germany and five to six months after you return, you're sent to Boston to have a specialized brain scan done. They pay to fly you there and back and this is done with each patient, so when they have enough data, they can use it to try to get the same program done here. Also, just an aside, I get a lot of experimental treatments done in the US and they're not covered by insurance. So my parents have to pay the doctor out of pocket and it usually comes to $8,000 or $11,000 each time. So a lot of things that are experimental are not only not going to pay you, but they're going to charge you as well.

I digress slightly from the thread topic regarding the above comment.

Regardless of weather you are covered under a universal government program or a private insurance company there is little hope of having anything that is still in experimental stages funded.


I have a copy of a Clinical Policy Bulletin from a US based insurance company that states that they consider intravenous administration of ketamine and lidocaine experimental and investigational for the treatment of CRPS because its effectiveness for this indication has not been established.

Interestingly my "universal" health care insurance here in B.C., Canada has covered my intravenous lidocaine treatments for the past 5 years without any question. I don't have to deal with lifetime treatment caps. I guess IV lidocaine is not considered experimental here but that being said the one time cost of an IV lidocaine treatment is fairly negligible compared to that of the ketamine coma. My doctor is now offering some patients low dose ketamine infusions under our health care system so there are no out of pocket private payments required. The problem here is that this type of treatment is mainly only offered in major urban cities so it's not so easy for those located in Canada's rural areas. That's one reason why they doctors here started offering subcutaneous lidocaine. It' much more cost efficient with much the same results as the intravenous method.

I know health care is a hot topic for many of you located in the USA and the term "universal" is being bantered around like a dirty word during the current ongoing debate. It's not my intention to hijack the thread to discuss health care coverage issues but I think it is important to make it clear that neither a government funded "universal" health care program or a any of the "private" insurance companies are willing to fund such an extreme experimental treatment such as Ketamine coma.

If we are to get any where as a community of patients needing treatment this type of funding must come from individuals and corportaions. We need to work hard towards significant fundraising efforts if we are ever to get anywhere towards finding solid treatments for RSD/CRPS. That's one reason why it is so important to help organizations like RSDSA.org raise funds regardless of what country we live in our what health care coverage we fall under.

Judy I very much respect your wisdom and experiences with the ketamine coma treatment and all you have been through. I was not brave enough to follow your path through to fruition and I thank you for sharing your knowledge with us here. I'm very curious to learn why they put the Coma treatment on hold in Germany.

When I spoke with Dr. Rohr a few years back he had already stopped doing the low dose 10 day awake infusions because he did not believe there was enough evidence, based on his clinical trials, to show that that it would provide any significant relief for those of us suffering from this terrible disease. He feared then that there were monetary forces moving the the low dose treatments forward in the USA.

Wishing you all well.

MsL

Thanks for the information, from everyone, on this topic.

MsL,
I used the term universal, b/c that's what they call it in Germany. I'm only relaying the information that was given to us by the doctor's there. Every country has negative and positive aspects with their health care systems. I was not trying to have a political debate over health care, I was merely relaying the information that we were given when we were over there. As far as no experimental treatments being covered by either public or private insurance is not completely accurate, at least not for the US. I have had my private insurance cover many of my procedures and treatments that were considered "experimental". I have had to fight for others to get covered, but the main reason my parents have had to put out so much money in the US is because there are, for the most part, only two or three doctors that I know of that do in-patient Ketamine for five days. Unfortunately, the one who will go the highest with the Ketamine is out of Hospital for Special Surgery in NYC and does not take insurance. So, my hospital stay, medications (including Ketamine) and other Dr's bills are covered, we just have to pay for him. I have also had Ketamine treatments in Philly, both in-patient and out-patient, with Dr. Schwartzman that have been covered.
As for the coma, it is only done in two countries and is still considered experimental for many reasons, but one of them is that there have been less that 100 people in the entire world that have ever had it done. Until you collect enough data and follow the patient's progress over a certain amount of time, it will continue to be called Experimental. As for what Dr. Rohr told you, he talked to us about similar information except that, he does still do the high-dose boosters. I had some done before I came home after the coma. You also have to understand that the coma is only used on the worst of cases. You have to have at least stage 3 RSD and the few that are unfortunate to have stage 4 RSD, like myself, it is one of the only treatments that hold any potential of putting you in remission. Once you have complete organ involvement, there are things that can give you some relief, but not anywhere enough to live a productive life. Before you can even be considered for the coma, you have to have a mental evaluation and you have to have tried every other treatment available. It is a very decision to make, and I hope that none of you get to the point where you have to. As for your coverage and other countries socialized medicine plans, you have people that rave about it and people that are terrified over it. I know this girl in the UK who has one of the worst cases of RSD I've ever heard of and was told the coma was the only thing that could help her. Unfortunately, she does not have the option b/c in the UK, if you pay out of pocket for an medicine or medical treatments both in the UK and outside of the UK, you will never again in your lifetime be covered in the UK. So she has to chose to move to another country, lose her health care for life, or remain in excruciating pain. There will continue to be debate over public vs private insurance, but that's not what I was getting at, I was merely trying to explain the different reasons behind it still being considered experimental. I truly hope that you were able to find something that has given you relief.

No I'm not trying to start a political debate either. Like you said there are pros and cons to different healthcare systems. Ultimately it boils down to the funding and who's going to pay for it doesn't it.

The Swiss have a good system something to be be admired. By law everyone must have health care insurance there and it is supported by a full consumer driven insurance market.

I'm curious are the boosters required following the ketamine coma treatment? How often do you have to have them? What exactly is a high dose booster, what is the dose and how long is it given to you? Will you have to have them for the rest of your life? Do you know if boosters are needed after someone has the low dose infusions? Have you been in remission since the second coma treatment?

I can't imagine all you have gone through and I'm so sorry to hear how badly you rsd spread through your body. I truly hope you have found peace and relief from your treatments.

Wishing you well.

MsL

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

Hi there,
Alot of great new information on ketamine thanks..

one thing to check when replying to a post (though this one wasn't too old) is the date of the origional post, this one is dated March 2008 when I origionly wrote it, though the information is still relevant and important to many of you..

Actualy my lidocaine treatments have me in a better place.. quality of life wise, and ketamine coma is not an option for me due to heart/organ involvement. thats just as well it scares me bad.

Anyway I guess this explaines the email I got on the subject as well

Dear Judy,

I 'm so sorry to hear that you had further complications causing your rsd to rear it ugly head again. After all you have been through I can't imagine how difficult this must be for you. The good news is that you sound like you are a very strong person and I think you are very brave.

I very much appreciate that you have so openly shared your experiences and knowledge with us here. Welcome to the forum!

Dear Sandel, thanks for pointing out the date of posting for us. Happy to know lidocaine is helping you too.

MsL