So what is the nature of the improvement. What theoretically is happening,physiologically to the body in a coma state with infusions? Is the resting state breaking the pain cycle established in the brain, repairing other organs, nerves, circulatory systems etc? What are doctors, reseach clinicians , and others involved or interested saying about the effectiveness of this approach as to what exactly is happening to cause temporary or possibly long term remission?

Richard,

What an excellent question, and boy I wish I could answer you properly, but I can't. I'm not an M.D.

There are more and more studies being published regarding the efficacy of Ketamine benefiting RSD.

I honestly don't know why it works. In fact, our primary PM Doc said to us, before we went, "Well, we've gone as far as we can with meds, you've tried everything...the coma thing scares the hell out of me, as a M.D., it doesn't really make sense to me why it works, but if it does, who cares. The only option you guys have left is an alternative approach or make peace with the pain mitigation you're at right now and live with it."

I am paraphrasing poorly. He was scared for us, he would've preferred us do the 3 day out patient, but our reason for not doing that was the reports on that don't show as long term results as the coma.

As for the relief, we couldn't touch the right side of my wifes body for the last 2 years. She was on about as high dose opiates as the doctors in Mexico anyway had ever even heard of. (Talking thousands of miligrams of Oxy a day + 1/2 dozen other meds 4-5x higher than what is considered "high dose".

The allodynia (burning sensation) is completely gone and has been since she's come out of the coma. Her skin can be touched, stroked, squeezed, handled. Her mobility (she had severe dystonia) has returned incredibly well. We thought the limb was frozen in place as the arm and hand hadn't opened or moved 'at all' in a whole year. Atrophy had set in. The burning, stabbing, electrical jolts, shooting, aching...it's all gone.

Now, with that being said, let's not get too crazy. She has had some of this pain return, albeit to a MUCH lesser extent...and the neat thing is, although she might feel some pain some days (this usually is due to the PT), the pain usually recedes the next day. She has occasionally had to take a 'pain med' a couple days for 'acute' pain, but we're talking 15 mg. of oxy maybe 2x in a day.

She continues to receive boosters (infusions) every 2 weeks. She is nearly done with this regimen. This most recent booster, she hadn't had any RSD pain whatsoever in these last 2 weeks so we weren't entirely sure about spending the money to get it done, but it's highly recommended to get boosters every 2 weeks for the first 3 months after the coma so that's what we're doing.

Our lives are 'slowly' feeling like they are returning to normal. I think we are/were so used to living in crisis almost every second of the day that it feels still a little bit unreal.

Everyone knows it works here because my wife and I actually argue again! Haha, that hadn't happened in a long time. She can eat real food again, has an appetite, can sleep 8-10 hours uninterrupted, can leave the house and do grocery shopping, pick the kids up from school, be a wife, mom, daughter, etc.

I'm a realist. I know this could come back. What is a comfort to me however is that I now know we have something that can actually make it go away again however; ketamine.

One of the issues of course is financial. This stuff is expensive. although it's looking like insurance companies are starting to step up to the plate. I haven't even tried to submit our bills yet, but will take on that gargantuan task soon and will report back my results.

Again, I don't know why it works, not really anyway. I'm not entirely sure anyone truly knows, but SOMETHING is working!

I hope that low dose ketamine becomes a standard early measure for those recently diagnosed. I suspect it would make a HUGE difference. For those who have it unbelievably bad like my wife did, if you are ok with the risks....trust me, we were scared too despite all the research we had done...and don't have the financial means, many patients have started foundations and fund raising efforts. It's hard, because alot of us are so private and it's hard to 'put your stuff out there for everyone to see'.

I hope this helped some.