Stickgirl - Reflex Sympathetic Dystrophy Message Board

RSD_Angel · 06-12-2003, 11:02 AM

Goodmorning,

I did find that website and I called for the 2 sided lament cards and theni am going to send tem an evelope so they can send me the orange ribbons. TY

I am doing ok i guess. Still having alot of pain inmy incisions, but guess thats expected, At least he gave me good pain meds to help with that, but even those meds dont touch my RSD pain in my foot.

The stim is ok. the pain is still there and it doesnt cover it all., soo i dont know what that means? I see my doc on wend of next week to get my staples out of my back nad my belly soo i will ask then. Im just getting tired of being sick and tired! I thought this would be a big difference , and it not! oh well..

Gotta go find something to eat.. nothing in the house and i would kill for taco bell or pizza hut..lol

Bryn

stickgirl · 06-12-2003, 11:54 AM

Morning bryn

I'm sorry your still having pain at the incision, hopefully that will go away in a few days. I know about the pain meds not touching the RSD pain.

I know how it feels, thinking this procdure will help and it seems it don't. Yesterday it was hard holding on to my sanity, seeing my dr weekly for almost a yr and I am still the same. I told him how hard life is with this pain, he does everything in the world for me but still. I want a miracle, I think there should be a cure somewhere. We go thru so much, all the surgies/procedures and we are still unable to do much.

It is very depressing, upseting, I could go for toco bell or pizza hut also. Meet you halfway

You are still so young, much harder on you then me I'm sure. I hope the stem starts working better, it is possible that it may take a few weeks to start feeling it maybe. Get some rest, eat something really good and turn on a comedy. I have tried to only watch things that make me laugh more since this thing came into my life.

Sure wish I could attach these commercials that a friend emailed me. There like 45 sec's and so funny.

I love mexican food and pizza also, strawhat delivers but pizza hut don't for my area. I do have a mexican food pplace a block away and go there when I am down. Food makes me feel much better at times.

Take care, need to eat myself.

lynn

dayton · 06-12-2003, 12:06 PM

Has anyone tried this ketamine influsion? I read about it on another board? just at thought. some doctor in Paige, arizone, does them.

stickgirl · 06-12-2003, 04:36 PM

Dayton many Dr's do the katamine drip. I have heard bad and good about it. For me, I'm am to afraid of the reaction I would have. I am allergic to so much, and have become so ill from other tries that I wouldn't.

glc · 06-26-2003, 03:35 PM

Dayton & Stickgirl,

I have had the IV Ketamine Infusion that you are talking about. It is NOT widely done in the US, in fact, there is currently only one doctor in the US that does this particular treatment. This is not the coma treatment that they do in Germany, nor is it the same procedure that they are doing in HongKong or other countries.

My treatment was successful, I'm pain-free and off of all pain medications now. I still have short term memory problems and trouble sleeping at night. Sleep is getting better. After not sleeping for almost 4 years, I assume that it will just take some time.

I had the treatment done about 6 months ago and have spoken with and met some of the other patients that have had it as well.

I just wanted to clear up any possible misunderstandings. There may be other treatments with Ketamine, but they are not the same procedure that is being done in AZ.

As with any treatment, it may not work for all patients. I had sensitivty to anti-seizure meds and couldn't take them, even though they did help my pain levels.

Ketamine was widely used for anesthesia in surgery in the past and from what I have been told is still used in burn victims and childrens surgery - this is what my previous doc told me while I was researching about it. I mention this to point out that it is not a "new" drug, that has no "history" in the medical field.

My experience was all good. There have only been about a dozen patients treated with this procedure so far in the US. It definately holds out a great hope for those who've been through everything else with no success and needs (and deserves) to be researched.

I totally understand stickgirls fear - especially with so many allergies. Fortunately for me the only reactions I had were from the anti-seizure meds. I tolerated all of my other meds pretty well.

Hope that helps with more info,
glc