coma disaster in Germany
 

jim@rsdsa.ccsend.com or jwbroatch@rsds.org this is the lilnk to a very distrubing story i read this am about a woman who developed pnemonia like i did in Germany but it is so horrible she is paralazed from the neck down. Has any one else heard about this. I am shoced - I almost died there too. very scary stuff.cz

The article is " this man chose to be in a coma"
Has anyone else on the site had the coma treatment, and if so, if you wouldnt mind sharing your story and your results. thank you. cz

I also have heard of this...

I have family in Germany and they have been keeping an eye on all of the reports about the Ketamine treatment for RSD/CRPS.

They send me all of the news both good and bad.

I know it works for some...but I am too scared to consider this right now..

Abbie

I honestly believe that you have to be in such a tremendous amount of pain to consider the Ketamine Coma. I am in pain, but I have been watching the reports too and to me the risk is scary. I hope I never have to make that kind of decision.

Hi,

that link is for an email address. Do you have an internet link for this story. I am very interested in seeing this. Can youplease repost a link to this story. Thanks!

Here is the link to the the article in People Magazine about the Keatmine Coma.

http://www.rsds.org/5/news/2009/Augu...LE_10_192.html


The Ketamine coma treatment is very serious stuff, it's not a cake walk where you just wake up after the 5 days pain free and go home.

I had a consult with the doctor in Germany who does the Ketamine Coma treatment a few years back. They have to intubate the patient and there are very serious risks that come along with that. Not not to mention the effects of the Ketamine drug itself, which they need to wean you off with other drugs. They request that you have a close loved one there to help you with any hallucinations when they wake you up. Dr. Rohr said to me "ultimately you are putting your life in my hands".

I don't know all the facts but it is my understanding that one woman died in Mexico while having the coma treatment. These are very tragic outcomes.

While it is true that 50 % of patients who undergo this experimental treatment are pain free I wasn't thrilled with those odds and decided to take the German doctors recommendations to have IV Lidocaine infusions first. I'm glad I did and I will only have the Ketamine coma if my RSD gets to the point that I am no longer able to walk.

MsL

i am also .. with most of you i dont think ketamine is a great idea for alot.. there is so many complications etc.. its just toooo new and no one really knows what the outcome will be ..

carrie

The People Magazine story, dated August 10, 2009 (?) is informative and quite balanced. Thanks to Sandy, Alison, CZ, Ms. L, et al for bringing this to our attention.

I have had this same conversation with my family, and they don't want me even to go there...I hope the best for all that are able to get the ketamine coma treatment.

http://dl5.glitter-graphics.net/pub/...tgy0iilc7k.gif

I would love to get treatment other than pain meds..at least I would FEEL like something was being done to help me go into remission.

:grouphug:

This was in the latest people magazine, also an email went out to everyone who is a member or on the email ist of rsd foundation.

I wish the magazine gave the webistes such as rsds.org and neurotalk for people suffering with rsd to learn about and talk to others, there was not a lot of focus on rsd but the ketamine was the main story.

I saw this story a few days ago in the Peoples Magazine (thanks Sandra for sending it me! :) ) and was really upset with what had happened. It's SO sad that people choose to go into the Coma to escape pain and come out even worse than before.

I agree with what the others have said about the Coma. My mum and I have had this conversation before and both of us have said that I wouldn't go into it unless I absolutely had to. I know some people who have been into the Coma as there RSD was so bad that it was life threatening - they were having fits, cardiac arrest etc. If it was me, I would have had to have tried all of the other possibilities before I considered going ahead with it. I just think it is too risky and needs more research at the moment.

I told my family about the ketamine coma treatment for RSD and they couldn't believe that there was such drastic treatment options for RSD - I think it shocked them a bit and made them realise how bad it can be.

I hope you are all doing well!