Hi, Sandy and yiisd:

Sandy, if I won a large sum of money at the lottery, my dream would be to immediately leave for Germany so I can get the RSD Ketamine Coma Procedure. Unfortunately for me, I do not have at least U.S. $ 50,000 to pay for this procedure and no one in my family is willing to loan me the money, even though I have a job and could reimburse them little by little. As for the banks, they do not want at all to loan money to chronically sick people, even if it is discriminatory and even if the syndrome of RSD is not deadly in itself. Since I just earn the minimum monthly wage, it will be a very, very long time before I can save enough money for this procedure, especially considering the fact that U.S. $ 50,000 is not enough if the patient has complications from the procedure, complications for which the tratments also have to be paid.

Sandy, I might be wrong, but I think the ketamine infusions you started receiving in April 2010 are booster ketamine infusions. I thought a patient first had to go through the Ketamine Coma Procedure (inpatient, 5 to 7 days) before receiving the (booster) ketamine infusions regularly enough so the RSD pain does not come back. I do not know what the differences are between the inpatient and the outpatient protocols; for example, which one has the highest success rate.

Another anesthesiologist I consulted for a second opinion (not the trickery one I mentioned in previous messages) and because I wanted to receive lumbar sympathetic nerve blocks (my RSD is in my left knee) refused to do the blocks. He claimed my RSD had gone from being SMP (Sympathetically Maintained Pain) to being SIP (Sympathetically Independent Pain). According to him, since my RSD pain was sympethetically independent, I had gone from having RSD to also having Central Pain Syndrome. I never heard anything like that... Several months later, I went to see this anesthesiologist again to insist on receiving the lumbar sympathetic nerve blocks. This time, while still refusing to give me the blocks, he claimed he never told me I had Central Pain Syndrome. I should have brought a tape recorder with me, hidden in my pocket, so I could have registered the first consultation with him, during which he told me I had Central Pain Syndrome. I feel like the doctors I can trust can be counted with the fingers of one hand... How sad...

Sandy, I tried many, many, many medications from different categories to try to control my severe chronic RSD pain. The only medications that worked are the long acting narcotic painkillers. The other medications had very little or no effect.

The primary care physician who first prescribed Duragesic for me (I was on Oxycontin before) said Duragesic is the strongest painkiller available on the market.

Have you tried the Dilaudid you mentioned? If yes, was it effective against your pain?

My doctors think methadone is only for the druggies who are trying to wean off of the street drugs they have been taking.

The public health insurance company I am registered with refuses to reimburse Duragesic when it is changed every 48 hours instead of every 72 hours. This company already harasses the primary care physician who prescribes my Duragesic with a change every 72 hours because it costs them a lot of money to reimburse. The harassment would certainly be much worse if the change was every 48 hours. I do not even know if it is allowed by law to have patches changed every 48 hours instead of every 72 hours. I do not know if I can take MSIR (morphine immediate release) between the 48th and the 72nd hours to "calm" the withdrawal symptoms I sometimes have between those hours.

I read on a health forum that Dr. Rohr in Germany does not do RSD Ketamine Coma Procedures anymore. I still hope Nigel will be able to get this procedure so he can get some help with his pain.

Quote: "...never lose hope..." I try to but it is becoming more and more difficult to keep up the hope when the sky falls on your head with bad news after bad news. First the RSD, now the Central Pain Syndrome. What next? Cancer, so I die and the two syndromes above cannot hurt me anymore?

Quote from yiisd: "Different medications react differently on certain patients." This is also what I think.

yiisd, if I may ask you this question, why did you wean off of Duragesic? Was it your choice or your doctor's choice? Had it stopped working for you? Fortunately for you, you have a doctor willing to prescribe MS Contin for you. Many doctors do not like to prescribe long acting narcotic painkillers in pill form because they are afraid that some pain patients, who also happen to be druggies, will break them in pieces to get a high. Maybe some pain patients do this, but their number must be very, very low.

Quote: "What is good for one may be catastrophic for another." Well said!!!

Thanks to everyone for sharing their opinions and information on this thread.

Priscilla