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.