Hi Sandra,
I hope you are doing well. I have been in terrible pain. I can't wait until the cold is gone. I don't know how you handle it in Canada. I saw your posting about your friend with RSD and thought I would add my two cents. I know you have to have at minimum $30,000.00 U.S. Dollars in order to have the treatment done in Germany. I don't know if your friend's present PM doctor can refer her either. You may want to research Ketamine Coma treatments in Germany for RSD on the Web and see what shows up. I did that before and found out the city they do it in but I can't remember it now. Best of luck to your friend and I hope and pray the both of you are feeling better. I've been down in the dumps too. I think it is the time of year for everyone. I just want to feel somewhat "normal" if you know what I mean. I can't believe I have been in this horrible pain for over 3 years now and it never lets up 24/7. I find it totally amazing. I hope you are doing well.
Take care,
kathy d

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.

Something *that* experimental and you have to PAY that much for this? I would have expected a small fee (to help cover expenses) in order to participate (a fee they pay you).

The Ketamine/Coma treatment is about the only "treatment" that isn't yet considered a valid way to treat. It hasn't been approved. It's highly experimental. So to have to pay THAT MUCH for what is in fact a major experiment. OMG! WTH?! I mean, where are the patients that participated in the study for this treatment? They have done a study, right?

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.

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