Reflex Sympathetic Dystrophy (RSD)

[penney]

I just had an appt. with a neuro.Dr. and he suggested the Ketamine induced coma, that has not yet been approved by the FDA. He suggested I would be a perfect canidate for this but did not explain why. I have RSD in my foot and ankle as far as I know (as of the last bone scan). Has anyone heard of this?

[Truth Seeker]

I would highly recommend, that you go to the conditions column on the left side of your screen and learn about coma.
Read the patients stories.
I cannot believe, that a neurologist would suggest something like this to you, it is outrageous.
Inform yourself about Ketamine, through patients stories, not doctors opinions.

Truth Seeker

[penney]

Thanks truth seeker I was totally confused when he suggested it, if I was in a wheelchair or if it was all over my body I might would understand it a little better. But he said I was a perfect candidate for it he video taped my feet, legs, arms. He also wrote on my paper dystonia, but he did'nt say anything about it to me. The Dr. is in PA. but I would actually have to go to Germany to have it done, because it is not approved here. I'm just about to totally lose it! You know I thought I would go (I had been waiting to see this Dr. for a long time I had been told how good he was with RSD) to see him and he would give me a nerve block in my ankle, and then in PT They could work with my foot and toes you know get them to move. But NO of course just one more DR. to let me down oh he was a really nice man, but I left there with having to try to find a anestilogist myself to get a nerve block. That isn't anything you do call them up and say hey give me a block in my ankle. PT is killing me I go 3 times a week, but Monday I'm calling a canceling the whole week, I may never go back I don't know I'm so confussed, I'm thinking about just getting a pair of shoes 3 times bigger than I need, just to get my foot in them and going back to work until I can't stand it anymore, I work in a factory, rubber boots,concrete floor, on feet 8 to 9hrs. a day 6 days a week. I'm now left with looking for another Dr.I live in KY. It is hard to find someone who knows about RSD. I really am at my wits end I'm getting so hateful with my husband and daughter, or crying all the time. Today I got my meds. mixed up and ended up passing out my husband caught before ihit the floor it was the best sleep I've had in about 2 months. I guess I'm rambling. I just really don't know what to do I'm ready to give up! Thanks for listening.

[chrisandrob4ever]

Penny,

I too live in KY and have RSD in my left ankle and foot. I just resently stated seeing a new dr. I live in NIcholasville and see Dr. Caldera at the spine & pain center. Please let me know if this helps at all. She has been very nice and trying everything and hasn't yet sent me to pt because pt doesn't help until the pain is relieved.

Good Luck to you

[reruho]

Penny,
I do not know much about the ketamine coma. I have heard it is used for very severe cases of RSD that have not responded to other treatments. I am surprised that he suggested it first off. Myself, I would talk about trying other things before I went to Germany.

Are you feeling any better since you took the week off from PT?

I saw the surgeon last week and was in pain for 5 days afterwards from his exam. I told the PM that I am not letting anyone touch me unless it medically necessary. He agreed that sounds like a good decision. My surgeon has referred me to a hematologist for a consult since I came from a family of clotters. I checked on my referral today and I was able to book an appointment on the 10th, if my doctor gets the package to the hemo office. The PM and I talked about doing a block the week before or of my surgery. I also asked my PM to send a letter to my surgeon with special precautions he will have to take with my surgery. We still have not resolved the pain med solution. At the present time it look like I will only be allowed tylenol and vicodin for 10 days before the surgery. I hate taking vicodin because it gives me headaches and makes me feel like I have a hangover (crappy).

Reta

[reruho]

Penny,
This is from "How to cope with pain blog" that I subcribe. Go to the site because they have a couple more articles on Ketamine.
Reta

Medications For Pain Series: Ketamine
October 29th, 2007 •
This article is one in a series on Medications for Pain… what are your choices? how do various medications work? what are the pros and cons? how about side effects? (Discuss these ideas with your doctor. Don’t make any changes to your treatment by yourself.)
The medication we’ll look at today is Ketamine, an anesthetic. Anesthetics are drugs which prevent sensations, particularly pain. Ketamine is an “NMDA-receptor antagonist”. Also in this class is Dextromethorophan (which is an active ingredient in cough syrup). These medications can be used:
• Topically (through the skin)
• By mouth in pill form
• Intravenous (IV) low-dose infusion
• Intravenous (IV) at high doses – “ketamine coma”
Effect of Ketamine:
Ketamine and others in this class are called NMDA-receptor antagonists. This means they block nerve conduction at a specific (NMDA) neurotransmitter site.
Uses of Ketamine:
Ketamine is only approved as an anesthetic for surgical procedures, not for chronic pain. In chronic pain treatment, it’s used on the skin for nerve pain, and by IV for CRPS (Complex Regional Pain Syndrome or RSD). The concentration of Dextromethorophan in cough syrup is very low. When used for chronic pain, it’s given in concentrated pill form.
Side Effects:
Ketamine’s short term side-effects include anxiety and hallucinations. There’s been concern over unknown longer-term consequences, including cognitive (memory) problems. However, a recent study showed no decrease in attention, learning, and memory in 9 patients with CRPS who underwent Ketamine coma. However, we’re still at an early stage in learning how to use Ketamine more safely for chronic pain.
Also Interesting:
Ketamine’s other uses include in veterinary medicine, battlefield medicine, and as a recreational drug. You might also be interested in these articles about Ketamine Coma and CRPS.

http://www.howtocopewithpain.org/blog/156/medications-for-pain-series-ketamine/

[penney]

Good Morning reruho Since I stopped the PT. I don't have the burning pain as bad. I've heard with RSD you should'nt do anything that causes pain. So I think it was a good idea for me to stop the PT. But if I have to apply for disability I'm afraid they will say that I didn't do the PT which could of helped me so they will deny me. I don't know really how all that works but I just have to do what works for me. I'm now having spasams in my left arm it has been hurting for about a month now I'm afraid it had spread. I think I would do the Ketamine injections but not the coma thing that is a little scary for me. I'm praying for you about your surgery, I hope it goes good with no complications. Thanks so much for the info I will check it out. I hope you have a peaceful & restful day. Penney

[alaska49]

I too am kind of shocked that your neuro. would suggest the coma, he must not know much info about it. When it comes to the coma it really is only used on very severe patients with full body and internal to the point their hearts are even being affected and they have failed all other treatments. There is the doctor in PA, Dr Schwartzman who does run the coma in Germany and there is also a doctor in Florida that runs the coma in Mexico. As of right now though Dr Schwartzmans program has been put on hold after a patient that went through it woke up paralized, it wasnt really their fault as she had gotten MRSA from a hospital here in the USA but it wasnt caught before going into the coma. The coma also has a very long waiting list, I think 2 years and just to get an appointment with him is 3 years waiting. Here is a link with a video that fox news did on a 21 year old girl going to go through the coma, http://rsdfoundation.org/en/FOX_10_9_09.htm

At the end of the video they do say when she came out of the coma more than half her pain was gone.This treatment is also very expensive being anywhere from 75,000 to over 150,000. I do know the FDA had given the go ahead for both Schwartzman and Kirtpatrick to do a trial of the coma in florida, with 10 patients. I havent heard yet when it may happen. I myself have been having the low infusions every week for about a year now which for now is the best help I have had, but am close to the point where the coma would be the next treatment. My condition is very much the same as the girl on the video, the funny thing is we are the same age too. I really have to agree with her when she says its much scarier to think of the future in such a bad condition then any treatment out there. When it comes to the RSD making you spend your life in and out of hospitals and in so much pain nothing really seems any worse then it is. The whole ER staff and hospital staff in 2 hospitals in my town all know me which is really sad, I dont think anyone should have the ER staff know you so well they just see my last name and have all the meds set up before they even take me back. A friend of mine and I are always joking how when we go on trips we dont research the best attractions nearby instead we are looking for the closes ER room. Well I guess I really should stop rambling.
Hope everyone has a low pain day!

Niki

[meglaser]

My sister knows someone who went to another country to have itdone. It worked, however this too is not a permanent fix as the person is sick again with their RSD. I also believe that this country has approved of a short term coma, however it is not the same think you are referring to and as far as I am aware of it is not as affective. I also have read where this coma that you are refering to is suppose to work. Keep us informed. I am starting to have major issues again and I will be asking my specialist of my options. Are you aware of any other treatments?

MEG

[penney]

Hello meglaser There is a site (www.international research foundation for RSD/CRPS ) You can watch alot of videos on nerve blocks, the Ketamine injections, and the ketamine coma, they show before, during and after, some are good a couple are bad. There is Dr. Kirkpatrick in Florida and Dr. Schwartzman in PA. there is a 2yr. waiting list. I think I would do the injections, but not the coma. The ketamine coma's are only done in Germany and Mexico because they are not approved here in the US. Maybe you could google the DRs. and find some info. They talk about how dangerous it is and they say it helps 50 percent of the patients. I read some where on line that they have been stopped from doing this procedure for now. I'm sorry that you have this awful disease it changes your whole life before I had it I didn't need anyones help I was a freaking wonder woman, I could do it all, and I did until now, just little things are hard to do now. I cry alot, get angry alot. But then I tell my self that tomorrow will be better, and there are people out there that have it worse than me. I wish you the best. Penney