FWD:RSDHope-Keith's Ketamine Procedure

Hello All! I am back!

I know, some of you are saying, "You left?"

Yup J

I went to St Joseph's Hospital in Hot Springs, Arkansas to see Doctor Harbut for my second 5-day in-hospital Ketamine Infusion. My first was back in early 2003.


The ketamine treatment I received is the original "Awake Technique" developed by Drs Correll and Harbut. This is the 5 day continuous infusion, beginning on a Monday morning and ending on a Friday. This version does not require weekly or monthly follow-up treatments. You go in, do it, and you are done. Hopefully the relief lasts for years.

I want to remind people at the outset that the ketamine infusion is not a cure. What the treatment attempts to do is interrupt the corrupted "pain signal cycle" that started the RSD/CRPS. If successful, it puts the patient into a remission of sorts.

It is a remission in that it eliminates all or part of the burning pain as well as the allodynia (sensitivity to touch). But I add the "of sorts" because even in the successful patients, it does not eliminate many of the side effects that accompany the disease such as; short-term memory loss, difficulty concentrating, sensitivity to sound/vibration, etc. It can diminish them though. It also allows the patient to significantly reduce and sometimes even eliminate most of their medications; this also helps reduce the side effects.

It is also not usually performed on patients under 18 because of the informed consent law. There may be some Drs out there who overlook or bypass the informed consent but it seems to be at great risk not only to the hospital, Dr, and program, but also to the patient. Not enough is known about possible long-term consequences of such ketamine use on younger patients whose bodies, and specifically brains, are still developing. At least this is my understanding of the issue. There is still a great deal being learned about its use on adults. It is a serious drug and in any of the three applications, out-patient, continuous-infusion, and coma, the long-term effects and ramifications are still being studied.

Having said that, how did I do and what was my experience like?

Great and amazing!

I will elaborate more in the coming days as to the specifics as many people have asked me for details on the program itself, what steps are involved, what each day felt like, what my experience was like, etc., but in a nutshell here are the basics of my experience.

The whole deal took about 12 days or so. I flew down on a Thursday. I had my first appointment on Friday. It was basically a follow-up on all of the paperwork I had sent in during the weeks leading up to that point, going over the reports sent in to Dr Harbut by my Doctors, doing some preliminary bloodwork, doing pre-admission paperwork with the hospital for Monday, meeting the staff, checking out where we would be staying the next week, etc. I also had a full work-up by Doctor Harbut, as if you were seeing a CRPS Specialist for the first time; filling out pain questionnaires, assessments, and of course a thorough physical check of my symptoms/problem areas. For me, my CRPS is considered systemic but the worst areas were eyes/ears, feet/hands, legs/arms, and shoulders/back. I did not have it on my chest.

That weekend was free time but I was told to take it easy and get as much rest as possible. I was also advised to stick to a low-fat diet, especially Sunday, so as to minimize the chances of, well, tossing my cookies basically, on Monday when they started the ketamine. They have found that the low-fat diet lowers the risk, okay by me J


Monday morning I checked into the hospital and we began the ketamine infusion. I will elaborate more on exactly what happened each day later but basically it ran until late Friday morning. We changed the level a few times during the week of course depending on how my body was reacting. By Friday we realized we had achieved all we were going to, about 90%, and so we stopped the infusion. By late afternoon/early evening when Dr Harbut was satisfied that the ketamine had metabolized and I was totally coherent and able to ambulate safely, I was released.

That night I slept very well, no ill effects at all. On Saturday we spent a fairly quiet day but we did get out and do a few things. On Sunday we went to the Garvin Gardens, amazing woodland gardens located in Hot Springs. We walked among the waterfalls, gardens, bridges, and ponds for hours. It was very healing and refreshing after being in the hospital for a week. We got some great pictures which I will get on the website soon. I guess we walked for about 2 miles altogether, stopping every so often but it felt great!

On Monday I was back at the hospital for a follow-up appointment and some blood-work. Some of my liver functions came back elevated but he said that was to be expected considering the amount of ketamine I was given. Did pain forms, etc. We scheduled follow-up blood-work for Tuesday. On Tuesday, more bloodwork and a final appointment. Liver numbers much better, am doing follow-up blood-work here in Maine this week. Did a final check of where the CRPS burning pain was still and where there was allodynia still, looking for any slippage from the final result on Friday. Noted some difference but not much.


Bottom line, when I left Hot Springs on Tuesday afternoon my CRPS was about 90% gone. That is, 90% of the burning pain and allodynia I came in with before the ketamine infusion, was now gone. What we were unable to touch was the burning pain in the eyes and ears. No real surprise there though as that was the original site. Back in 1974 my RSD started there. It wasn't until 1985 when I broke my back that it spread everywhere else so the eyes have had a very long time for that pain cycle to become entrenched. There was also a little allodynia on the bottom of my feet left.

After a very difficult travel home due to many weather delays, over 13 hours from first airport to home, I started getting a little burning back in the front of my feet. The travel, combined with a very bad bed at the Hilton hotel where we stayed in Little Rock for two nights, made my back even worse. So it has been a rough few days recovering but I am starting to feel better.

What am I left with for pain now? About 85% relief of my CRPS burning and my allodynia. It remains in my eyes/ears and there is a little in the front of my feet.

What isn't helping the feet is my degenerative disc disease and failed back syndrome. This causes shooting pains down my legs, that "walking on broken glass" feeling in the feet, and of course back pain. I know many of you also suffer these problems and know what I mean. These same symptoms can be confusing sometimes.

I also still have the fibromyalgia of course. The ketamine didn't help that nor did we expect it to. That is a totally different mechanism.

Am I happy with my results? ABSOLUTELY!

Would I do it again? ABSOLUTELY!

I feel very fortunate and blessed to have been able to get this treatment and these results. I want to thank everyone who prayed for me and thought about me during my treatment and travel. I also want to thank those of you who called and/or sent emails. It was most appreciated by not only me but also my family.

I made sure to take pictures of the clinic, the staff, and the special suite they made for the ketamine patients and I am going to make a new section on the website for this material. I will add a more detailed description of my treatment and some tips for patients and loved ones who might be going own there in the future; what to bring, pack, places to see, restaurants, etc. Some of the previous patients are going to help me put this together!

We are also going to be working with the folks at the Mercy Lodge to try and raise some funds for their facility. This is the housing the hospital provides for patients and loved ones who need a place to stay while they are having treatments done at the hospital. They only charge $10 a night. We were able to stay there for five nights and it saved a lot on a hotel room plus it is right next door to the hospital. They are in dire need of items like bedding, sheets, towels, and other such things. More on that down the road.

Hope this answers some of your questions and I will get to the more specific stuff on the website in the coming week. If you had written to me while I was gone, please give me a week to get back to you. I have hundreds of emails I am working on still. If I haven't gotten back to you in a week, drop me a line again. My mailbox overflowed at 1,000 and wouldn't take anymore. Thanks again everyone!


Peace, Keith Orsini

American RSDHope
http://www.RSDHope.org

Also, be sure to check out the WHAT'S NEW section for the latest information. It is normally updated every other week. I will be updating it this weekend for the last few weeks.

Check out the latest RSD Research Grant information!!!