Health Organization for Pudendal Education

Has anyone had a ketermine infusion to help with the pain

I had one 4 hour Ketamine infusion during my pudendal surgery with Dr. HIbner. I am going back for a boost in October. I am going to see a doctor in NYC that does Ketamine infusions. My appointment with him is the end of October. My pelvic floor PT has really encouraged me, more like nagged me, to really get the CRPS/RSD under control as everything is a loosing battle with muscle spasms in my abdomen, pelvis and legs and I'm continuing to have more secondary problems with my joints due to the muscle spasms.

There is a forum called NeuroTalk that has a subforum for RSD. In that forum there is a thread with a list of all the doctors in the US that do Ketamine infusions. There are a variety of options for infusions. Some dr.'s do 5-10 day out patient infusions with boosters every 1-4 weeks, depending on patient. Currently, you can only get the 5 day Ketamine coma in Germany and Mexico. I know Phoenix has been trying to get approval to do the Ketamine coma but last I knew it was still in the works. If you want the list of physicians that do Ketamine PM me and I'll send it to you. Many of these dr.'s don't take insurance so you might have do to some calling around if you are interested. There is a FB page called Ketamine Klub that has a lot of information about Ketamine. This is an invitation only group so you need to send them a note to join. The RSD forum on Neurotalk also has alot of information about Ketamine. For me, I'm not looking to do the Ketamine coma, at least not yet. I would like to try some of the outpatient protocols first to see if they work.

As far as the Ketamine part for pain. The first thing I noticed right after surgery was I didn't have the sensitivity to touch in my legs and that was immediate. I told Dr. Hibner's NP, Lisa, when I saw her 5 day post-op that she could touch my thighs and I wouldn't swear at her to not touch them. However, it did nothing initially for the pain. I remember the first morning after surgery I stood up at the bedside table to eat breakfast and I could feel the pain coming on in my legs after just about 2 minutes. It is a very distinct pain and I really can't describe it. I remember looking down at my legs and they were a medium bluish/purplish color and I thought "Darn the Ketamine didn't work." However, about 1 week post-op I noticed my legs didn't hurt like they usually do and they felt much better for about 2 weeks. How long did the effects last: the hypersensitivity to touch slowly, progressively wore off over about 4-6 weeks, pain - after a delayed response about 2 weeks, and heat sensitivity is almost gone and I'm 3.5 months post-op.

I did some literature searches to see how my response compared and the basic research done on lab animals like rat the biggest effect was seen on sensitivity to touch followed by pain response. I was pleasantly surprised when I read this after I had the Ketamine. Since I hadn't done any reading before I had the Ketamine I had no knowledge of what to expect. Therefore, I was unbiased . There is a dose dependence to Ketamine and one needs higher doses to really get at the pain response. During the outpatient protocols and/or inpatient the dose is titrated up.

I'm still in the learning curve on the whole Ketamine thing. What are the different doctor protocols, how are the doses titrated, what drugs do they give at the same time to reduce side effects of hallucinations, frequency of boosters, etc.

Thanks so much nyt for ur input n help.
What is a 5 day ketermine coma I have not heard of the coma bit before. I am going to try to get the 10day ketermine so will let u know on Thursday the outcome.

The ignorance of me but what is rsd I have heard a few ppl talk about it but haven't really paid attention.

I'm getting nervous to have the ketermine v awhile n hopefully it helps with the pain

RSD stands for "Reflex Sympathetic Dystrophy." The new name for this same condition is called "Complex Regional Pain Syndrome" or CRPS. The nervous system has a rest and relaxation portion that is due to the parasympathetic nervous system and the opposite which is a flight or fight that is regulated by sympathetic nervous system. In RSD/CRPS the sympathetic portion of the nervous system goes into overdrive so that individuals have swelling of a limb, redness, can loose hair or increase in hair in the affected extremity, muscle atrophy, limb will change colors to purplish/bluish color when standing, sensitivity to touch, the extemity is usually colder when compared to the opposite arm or leg, sensitivity to heat or cold. RSD/CRPS is due to changes in the spinal cord and brain.

Do you have RSD/CRPS? Why do you want the 10 day ketamine?

Hi nyt,

The ketermine infusion is to help with my pain but after I read ur response I do have rsd as my left leg is always swelled have loose hair amongst alot of the other symptoms. I've never been told I have rsd or crps but it all makes sense now. Does the ketermine work for you?

That's a nice concise description of RSD/CRPS, Nyt.
Ezzl, I had what was diagnosed as RSD about 3 years after surgery. My pain had been poorly controlled and I had been pushing myself through it, trying not to give in to it, working, trying to be all things to all people. My hands/fingers became swollen and red and burned; at night, I'd lie in bed with them against the cold wall. The specialist said I needed to do whatever I could to get the pain under control and suggested neurontin (I was already on amitriptyline and codeine), but neurontin didn't agree with me, and neither did morphine or oxycodone. In the end, I cancelled all obligations, appointments etc, and went to bed and stayed there for about six weeks. I read, and only got up to stand and eat meals, go to the bathroomand keep the circulation in my legs ticking over. The nerve pain settled with rest (it came back once I started moving around, alas) but the RSD slowly disappeared over a couple of months and didn't return. I learnt a valuable lesson here, about the power of rest and giving oneself permission to let go and convalesce.

I have had many treatment with Ketamine. The first lasted five days via infusion IV. It gave me great results at the time although i was absolutely floating and was out of it completely. The second one was for ten days with continuous Ketamine via IV....I felt little pain but felt so many other things like sounds were so amplified...my ipod sounded like i had an orchestra right beside my bed!!! Once it was disconnected it all crumbled and the pain came back imidieately...much to my disgust!

Hi
Just wanted to ask if anyone has had Ketamine infusion (outpatient version) for pain. My pain doc in NY does this in his office where he monitors you for a few hours.
I had it done once and am scheduled for tomorrw again.
The first time I had out of this world feeling (like a crazy LSD trip) not that I ever tried the latter! I felt like I couldn't get off the table very heavy, very weird feeling.. The pain was diminished, but when they brought me out of it gradually, I felt quite nauseas which took awhile to wear off.. This time he will not use lidocaine and not keep up me under as long, in order to diminish that side effect.
The idea of this is to turn down the central nervous systeme... and in turn bring down the pain levels..I think each treatment builds .. and gradually brings your levels down.
I am quite reluctant to try this again,, but I am in such pain ( sitting standing etc) ...PN pain and we want to break the cycle.
Anyone have this done on an outpatient basis?
Thx for any comments! You are all so knowledgeable!
Best wishes
Kathy

Tevej13, you copied my paragraph directly from my post. I'm assuming you meant to reference me and then post your own experience.

nyt wrote:Tevej13, you copied my paragraph directly from my post. I'm assuming you meant to reference me and then post your own experience.

Note the links at the bottom of the post; it's spam.