freebird76... friends with others who have CRPS. i was diagnosed almost 8 yrs. ago now.i was wondering if any of you get the ketamine infusions (not the coma)? i've been getting the infusions and today actually it will be 2 yrs. that i started this treatment option.i would like to talk to others who get the ketamine infusions as well and even someone who has went to Germany for the ketamine coma. i know 2 people at my doctors office who went to Germany for the coma
Reflex Sympathetic Dystrophy Syndrome - Hi everyone ,i am new to this group and I'm hoping to become
- Posted:
- 18 Jan 2010 by freebird76
- Topics:
- reflex sympathetic dystrophy syndrome, ketamine
Details:
Responses (6)
teal19 Jan 2010
ok,im going to be of no help whatsoever,truly truly sorry,but im very interested in what your talking about,I've never ever heard of anything liek this. what is it? and what is a ketamine coma,and do ppl actually go to be put into a coma? im just really interested and would like to learn more about this if you dont mind?! you can send me a private message if you prefer. thanks,and hope im not offending you.
kiwibug2311 Feb 2010
Hi, I do not have CRPS but I do receive ketamine infusions. In your response to the other person I read that you receive infusions every month. Do you still go for the 4 hours? I go for only an hour and could never imagine sitting through 4 hours of ketamine. I don't think any patient that has been there with me has really ever gone longer than an hour. I don't have a chance to talk to many people who know what I'm going through (the infusions and the feelings during infusions, etc.), so a response would be appreciated and welcomed :)
freebird76
12 Feb 2010
yes i still go for 4 hrs. i'm actually going every 6 wks now but i'm finding once a month was better for me so i may have to go back to every month.i didn't know they gave ketamine infusions for anything but CRPS and i didn't know they had a one hour infusion?they give a medication called versed not sure if i spelled it right along with another med. if needed so you don't feel a lot of the effects of ketamine,the meds help relax you and sometimes make you fall asleep during the infusion.it actually goes by so fast the 4 hrs. is over before i know it and i can't believe i'm done already.what are you getting the infusion for if you don't mind me asking and do they give you other meds. like i explained? i have never had any side effects from the ketamine but feeling very tired and i actually enjoy getting the 4 hr infusion b/c it's the only 4 hrs.
JessupEdward
3 Nov 2010
To those on Ket IV drips, on many mgs/kg/hr?
freebird76
21 Nov 2010
the top doctors that do it closest to your area are in philadelphia and new jersey these 2 doctors work closely together and both do ketamine in their office they have a treatment room set up.you can go to a hospital in this area too and stay for a high dose of ketamine that gets pumped in your system over a few day stay .my doctor is one of the top rsd doctors and works in the new jersey office he works closely with all the top rsd doctors.he opened a ketamine room in his office in my area.he doesn't see new patients unless it's a severe case but he will see you for a one time visit and direct your current doctor where to go for the ketamine.the other doctor my doctor works with in philadelphia also has the ketamine clinic has a year waiting list but he may see a severe case as well.people travel from all over to see my doctor and the other doctor for the ketamine.one person was from georgia and stayed in a hotel with her mom for weeks to get the ketamine by my doctor ...
Barb Malone
2 Apr 2013
Sorry Im new to this site. An I did post earlier & not really nowing how to go about this. But I was on the waiting list for 3 yrs for the Dr in Philiadelphia. He is a very very good Dr. But is retireing an The Dr that is replacing him is from Hershey Near were I live now. But My doc said he worked with him closely to teach him what he know now. I also stated that I found out that I have CRPS throughout my nerves system. I have pain all over. But the place is called Drexel Univ. That's were I went in Jan of this yrs after waiting for 3 yrs. But worth the wait. I go in July to the the clearance of 3 Dr.s an then go from there. freebird how bad was ur CPS?? Oh an my Dr in Philly his nurse said the they do the 1 day coma but just about all the ins wont cover it you have to pay yourself.. She said they had 1 who did it & paid & they haven't heard anything from him yet. Which to me is amazing. I no there isn't a cure, But could you give me alittle more insite on your CRPS??
freebird76
21 Nov 2010
yes it has helped my pain.i used to be bed ridden and couldn't drive for years.i've been getting the ketamine going on 3 years now and i'm no longer bed ridden and i started driving short distances again.i no longer take morphine or fentanyl patches or any other heavy duty pain med i used to take and i took just about all of them.i take suboxone now and tramadol the ketamine is basically my pain med at this point. when they spread my treatments out longer i do get pain back 4 weeks is how long it seems to last for me. there are bad days but my pain is much more tolerated now .this treatment has saved me from being completely bed ridden.the coma is thousands of dollars and very risky only the most severe cases can get it and there is a waiting list they take the most severe first .the coma is only done in germany and possibly one other place and insurance doesn't pay for it.i have medicare and they do cover the majority of the ketamine treatments i get.
freebird76
21 Nov 2010
i have to pay about $100 each treatment and medicare picks up the rest but right now i'm not paying for them b/c another insurance company is paying for all of it.after that runs out i'll have to go through medicare.
Barb Malone2 Apr 2013
I have had CRPS since 2005 from a reaction to a medicine. But 3 yrs ago my pain mgmnt doc introduce me to a Dr. in Philadelphia who does nothing but CRPS. I called 3 yrs ago an had to wait for 3 yrs to see him. BUT it was well worth the wait. I started out with my left leg having no siacatic nerve, but some came back. I have nerve & muscle damage in left leg. Still loss of both nerve & muscle in my leg. Also start having my migraines again, found out my neck nerves was being pinch by my muscles. To make a long story short, I saw the Dr. in Philly & he saw me & told me the wonderful unpleasant news that I had the CRPS all through my nerves systems. BUT that I also qualify for the Ketamine infusion, but 1st have to see 3 Dr. to be cleared. A heart doc, a physgo doc & a sensory doc, once I pass the CLEARANCE then I will be called into hosp for a 5 day Ketamine Infusion but in for 7 dys. I will be in ICU.
2 Apr 2013
I have had CRPS since 2005 from a reaction to a medicine. But 3 yrs ago my pain mgmnt doc introduce me to a Dr. in Philadelphia who does nothing but CRPS. I called 3 yrs ago an had to wait for 3 yrs to see him. BUT it was well worth the wait. I started out with my left leg having no siacatic nerve, but some came back. I have nerve & muscle damage in left leg. Also start having my migraines.. To make a long story short, I saw the Dr. in Philly & he saw me & told me the unpleasant news that I had the CRPS all through my nerves systems. BUT that I also qualify for the Ketamine infusion, but 1st have to see 3 Dr. to be cleared. A heart doc, a physgo doc & a sensory doc, once I pass the CLEARANCE then I will be called into hosp for a 5 day Ketamine Infusion but in for 7 dys. I will be in ICU. The 2 wks I go back for another infusion. But Ive been suffering pretty bad for the passed 2 yrs & the passed 6 mnths have been hell.
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your not offending me at all in fact i was thinking no one was responding b/c they never heard of this treatment option for RSD.the word needs to get out there about RSD and treatment options b/c the condition is so poorly understood and so many people never heard of RSD.
there are 3 treatment options for ketamine that i am aware of and these options are for patients suffering from RSD and for most patients this is a treatment option for those that have tried everything else of pain meds. to sympathetic blocks,etc b/c there is no cure for RSD it's a progressive disease.ketamine is a anesthetic & tranquilizer for humans and animals.
Expand this post...
for people who have severe RSD that are wheel chair bound and can't do anything for themselves and have no quality of life the ketamine coma is an option.yes it is a coma and it's commonly done in Germany at the moment.doctors induce very high doses of ketamine to induce a coma. for 4 days the patient is in a coma and many awake w./ no pain.this is amazing b/c people who have had this done get some kind of life back they are able to walk again and restore function.the catch is maintaining the pain relief so patients have to go for what they call booster infusions of a lower dose ketamine and how often depends on the patient. the second option is a 5 day hospital stay for a low dose continuous infusion of ketamine which is less extreme than the coma option.patienta still get booster infusions as needed.these booster infusions are about 4 hrs. of ketamine infusion.which leads me to the last ketamine option and this is the one i receive.my doctor is one of the known RSD specialists and he does the 4 hour low does ketamine infusions in his office.it depends on the patient how often you need the treatment but here's how it begins: for 10 days you go have a 4 hour ketamine infusions the dose gradually gets higher through the 10 day period depnding on your tolerance,i am on the highest dose than can give.also if you don't have good veins your doctor may have you get a pic line b/c this is a lot on your veins( i had to get the pic line)plus it's kind of a long process.after the 10 days you go once a week for so many weeks this again all depends.then every other week,every 3 wks.,and so on.some patients stay at once a week or every 2 weeks or once amonth and some can spread the treatment out longer.i go once a month.this is not a cure b/c there isn't one but it's an excellent treatment for RSD it puts the pain in a remission like state not for everyone but for a lot of people or it minimizes pain where a lot of patients greatly reduce how many meds. they need to take. the trouble still is maintaining the pain for me i notice the pain comes back about a week before i'm due for my next treatment.and this treatment option is thought to prevent progression in the disease as well.i hope this helps some if you have any questions let me know and thanks for asking about it.
I had never heard of RSD until a woman who has it moved into my apartment building a few years ago. She was in pain 24/7. She had one of those simulators where they put an electrical wire and battery pack inside your body, so she could manage her pain that way. I'm going to tell her about Ketamine. It has helped my depression quite by accident. I went for a series of epidurals to help my back pain and it turned out Ketamine was one of the sedatives they gave me. It's been a couple of months now and I'm still feeling great!