Hi there,
My name is Adriana. I have RSD/CRPS...going on 3 years now. I've had no luck with any previous treatment. I have tried just about everything, except things that are really invasive, like surgery. I REALLY don't want this spreading. Anyone know of any treatments that may help? I've been thinking of Ketamine infusions...or coma. Anyone done this before?
At the end of my rope

Go to seach this forum and type in Ketamine....there are many posts...Ketamine has been very helpful for some but not everyone...The coma is not done in the USA. Where do u live? You might want to look at the tDCS thread also..

Debbie

Thanks Debbie! I've actually done a bunch of research on it and am looking into the infusions. I live in Washington State. I just found out that L&I is going to send me to OHSU (Oregon Health Sciences University), where they actually have a CRPS specialist! So...a bit of good news for now. We'll see how it goes. Thanks again

I would love to know more about the program at OHSU if you don't mind. I live in Oregon and am desperately searching for pain management for my daughter. She's run through all the usual treatments and still in 24/7 pain and no relief. Do you know if they are doing ketamine there? So far this is the only thing that gives her any relief but she can only get short infusions where we currently live. Thanks!

Here is a link on this website that lists MD's that do Ketamine infusions. I had to check the entire list against my health plan (BCBS) to see if any of them take my insurance. (**) Oh, I guess I can't post links yet because I don't have posts yet but do a search on this site for Ketamine infusion dr. lists.

There also is a link here that is helpful if your insurance **. Again do a search on this site for Ketamine insurance denial. Both of these links were posted by DeesRSD

Thanks to DeesRSD for both of these very helpful links.

Additionally, as I have just learned on this site, there is a complete up-to-date list on facebook under "Ketamine Klub". However, as I have learned this is a closed group and I am still waiting for someone there to accept me. (I push the button to try to get invited but noone has responded yet)

Best of luck.

Sorry youre going through this, Adriana. I know that Ketamine is not for everyone, but it does help some people a lot! I'm going to a Dr tomorrow to look into this option myself. There is no longer a Ketamine coma program - not in Germany or Mexico. Both were shut down for various and often debated reasons. I'm dont know where in WA state you are, but there is a Ketamine program in Yakima. Waters Edge Pain Relief Institute 509-574-3805 I'm not at all familiar with the pratice, as I live across the country, but I found this info for someone else in WA about a week ago, so I wanted to pass it along to you as well! I wish you well, and hope you have a low pain day!!

Be VERY careful with that treatment. My dear friend Ashley tried that in L.A and almost died. ** As for me I have a Spinal Cord Stimulator, and it works good.**

Hello Adriana & Lisajean,

I have read and spoken to numerous practitioners in the field of ketamine infusions recently concerning the coma treatments that you speak of and they are VERY risky and not backed up by peer reviewed journal articles. As the previous member wrote the two programs that were performing these treatments have had significant set backs due to a death at the center in Mexico from a patient that had many comorbidities who may not have been a good candidate for this treatment. The center in Germany also has had some recent issues with a patient ending up with a tracheostomy after his treatment.

Be very cautious and ensure that there is a board certified physician with proper training running the program.

There are numerous centers in the west that are performing infusions for this purpose with good results, in a safe manner, on an outpatient basis, not involving comas.

This web site has a comprehensive list: **edit**

Germany banned it prior to 2010 after a death there.

Barbie Engle flew from Ariz to Florida to have this procedure done. She is now in remission (many youtube videos available). This is now my mission to find a doc in san diego who will help me. It can be done as an outpatient basis and Im reading insurance now pays for it. They say it reboots the brain (like rebooting a computer). Which makes sense to me to calm the central nervous system down. I read that patients can be pain free for 3-6 months, some a year then only periodic boosters are needed. Taking drugs for the rest of my life only to mask the pain is not acceptable to me. This is my only hope.
Today Nov 3rd is my 4 yr anniversary of getting this horrible disease.
Everyone wish me a HAPPY ANNIVERSARY!! lol...this sucks bad
Shelbie