i am uninsured/self pay,i cant afford ketamine and spent the last year going through doctors like hot cakes.. hoping this new one will be better..

The posts are probably old ones. It was banned in Germany before 2010 because of at least one death, I read the blog of a man who's wife deid there. When I found out Addenbrookes were going to send me there June last year I contacted the German Embassy, they refused to Confirm or Deny the ban but put me in touch with the only clinic who carried it out. Now only done in Mexico. Addenbrookes now this because they stopped trying to raise the funds
You say about funding, when you see Dr Goebels ask him why when asked if he would be prepared to spend 3 or 4 hrs for a chance at £500,000 for research, 50 witnesses heard him say "I don't need the money."
If you want to help the fight in this country then PM me

Cancer patients die but they don't stop chemotherapy... Ugh. I PM'd you.

I, too, was a very rapid spreade. Mine went right foot, leg, hip, left foot and knee, and right hand to elbow (due to a botched IV). I now have an scs(spinal cord stimulator) implanted to pretty much keep the rsd in my legs in check and I take meds topomax and dilaudid to keep arm pain as well as it can be. Course, it's hard to type and write, but I'll take somewhat pain control over non e any day!

It is a very tough disease and I have been working with a counselor as I was a marathoner and triathlete before diagnosis. Soooooo, there has been a period of adjustment and acceptance for me. I was extremely lucky to be diagnosed early and treated aggressively by an awesome pain doc who specializes in rsd and believes how horrible it is!!

Anyway, hope things go well and get better for you!!

TK

What is the SCS like? In terms of sensation and day-to-day wearing the thing, can you sleep on your back? I tried a TENS machine and I didn't like the feeling at all. Is it similar in that there is a tingling sensation when you use it? Or does it work in the background with no particular sensation? Does it get rid of most of the pain or just the shocks?

I hope it's helped you anyway

My RSD started in my left ankle when I was 13 and stayed there for about 5 years. It was bad but it was contained to that area and I was still able to do most of what I wanted if I really pushed myself. I didn't know what I had during those 5 years and I didn't understand why it hurt so much...I just wanted to live my life the way I wanted and to live it fully. My RSD was so much of a problem that I didn't have the chance to do that. I realize now that they were just stupid and stubborn attempts that always ended in tears and being told it was all in my head until I almost believed it. I don't know what made things suddenly change after that. All at once...within 2 months it spread 'like wildfire' from ankle to calf to entire leg to hip to lower back and left arm...9 years later it's now effecting my entire left side and recently my right arm. Nothing can be compared to the helpless feeling of it spreading and steadily getting worse without knowing when or if it will ever stop. I have seen mentions of the Ketamine coma in this thread and it reminded me of the weaker 'safer' Ketamine infusion alternative available in Canada. They give you enough to put you into a deep monitored sleep for about 5 hours a day every second or third day. The doctor was hoping that in waking up after one of these episodes the pain would be lessened or shut off and it wouldn't spread anymore. The first set of infusions were scheduled during a 30 day hospital stay and they were very successful in terms of getting me out of the wheelchair and walking with a cane. The second set of infusions weren't so successful and neither was the set after that and they were ended. Ketamine in general did help bring down the pain for a time and also I was able to do more than ever before directly afterwards but in my experience it's results were not lasting enough to stop the spread and I am back to square one now. I have heard success stories with it though...it can shut off pain in some if you can handle the brutal side effects. Anyway I wish you the best in your search for what works for you.

Yosh,

I actually don't mind it. I sleep on my back. I dial it down at night. I don't get shocks. It's like a buzz is probably a better way to describe it. People always compared it to an internal tens unit to me and it never felt like that to me at all. Most of the time I don't really think about it. I still take meds due to my arm, but luckily the legs are taken care of.

I know a lot of people here are divided on them, but without mine I was pretty much bed ridden (at 38) so it has pretty much changed me back to functional. Hope this helps!!

TK