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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Yes ketamine is also known as 'special K', not many know ketamine is a drug used primarily for animals as an anesthetic. You're correct the coma's are only done in Germany and Mexico. You go through Dr. S for Germany and Dr. Kirkpatrick for Mexico. They only send the very worst cases. The ones who have been on every drug out there and have "maxed out" on doses of the strongest meds available and have been through every available treatment and as a result are bed bound with no life,pretty much.

Ketamine coma is not a approved treatment in the US because not enough is really known about the long term effects of it on a person and from what I've read, the research papers and stuff, the coma hasn't shown itself to be effective enough. The last thing I read said of the 38 patients sent to Germany, do well initially for a few it lasted 6 months BUT the pain returns in 55% to 60% of cases. That is more than half and for many the risk isn't worth it.

The ketamine infusion that is done over 5 days is done by Dr.S and Dr. Harbut who was in Arkansas but I believe is in Arizona now. The treatment is considered experimental and I haven't heard of any insurance company who will pay for it to be done. I know it costs a few thousand dollars as it has to be done inpatient in the hospital. They hook you up to an IV and increase the dose over the first couple of days before going back down and then take you off the IV the last day. Then you stay in town for a few more days being monitored by the Dr as to how you feel and pain level,etc. Then you can go home. I think in all you go a few days before the treatment and stay 3-5 days after so you can see how the $$ would rack up quick never mind the hospital and stuff added in.

Hope this helps answer things.

Hugs,

Karen
Sandy,
No.. You don't need a prior blocks.. All you will need is to see a Cardiologist prior.. at least I did.. and the reason for that is obviously to make sure everything is ok with your heart because the lidocaine does lower your blood pressure.. During the infusion, you are hooked up to around the clock heart monitor.
Mine was a five day stay inpatient on the cardio floor.. It does make you very tired.. Its really very harmless.. You just sleep.. which is great to actually get a good night sleep in.. Your followed up with pill form after leaving the hospital.. It takes about three days after the hospital to start feeling normal.. but compare all that to day and nights of pain.. Its nothing.. The IV does not affect the RSD at all... You can actually feel the pain go away within hrs.. Its such a treat.. Some people need to go about every three months.. some once a yr. it all depends on the actual individual.. I only needed to go three times.. and Its been about 1 1/2 yrs now.. I don't even take the pills anymore... I have met so many other pts and made friends with them who have had this treatment.. This is why I want everyone to have the chance to try it..

Deb,
Yes its an IV drip.. Its really know big deal at all.. You don't even know its going in you.. Your just tired.. and painless. Its really worth thinking about.
The goal of this infusion is to get you off all those pain killers.. And it last so much longer.. Like I said to Sandy.. Something to really think about.. Its really worth it..
Michelle
Hi Michelle,
Wow -- Thanksgiving dinner sure was tasty!
I'm on regular Vicodin, but yesterday I requested the 7 1/2 Vicodin (I think it's called Narco, Norco???) -- Maybe they wouldn't do it because I'm not on the stronger type narcotics?
I would absolutely LOVE to experience the pain going away with the lidocaine infusion -- I had no idea it was a 5 day inpatient thing though -- Wow. I'd have to get a sub if I was going to miss 5 days of work -- I don't know how anyone works 8 hours a day -- I'm 15 hour contract so it's actually 1/3 time -- I work all day on Mondays and Wednesdays and holy cow -- When I get home, I gotta kick up my feet and stuff -- Pretty darn sore -- I think I'm getting pretty scared again about my RSD -- and I really don't like that fear.
Gotta run for now,
Deb
liznip..
Sorry its taken so long to answer your question.. I've been working four days a week now.. Not use to it after being out of work all these yrs.. lol
The lidocaine is a five day in patient infusion.. So your in for five days.. All you do is sleep.. Its nice.. Your pain free..
Each person is different who has this treatment. For me. my first one only lasted three months.. The second was about a yr.. and the third has been a while now.. I say may two yrs. and I am about 90% free of pain.. I can handle the 10%. It has totally improved my life. I am now back to work.. My mental state is so much better, which in return my RSD is better.. Any type of mental upset will flare you up.. I think it all just works together. Having chronic pain is horrible, then depression sets in.. So after they relieve the pain you mentally improve.. Going back to work was the best thing I ever did..
Thats why I just wish everyone could have the lidocaine treatment Like i have.. or even the ketamine.. They say that works even better..
Its so worth talking to your drs about it...
Good luck.
Michelle
Hi Michelle,
It sounds as though you've had so much success with the lidocaine infusion..I have read it in so many of your posts and it sounds so hopeful and so possible !!!! Could it be done with lower limb RSD which could be migrating?
Can you describe what is like to undergo such a treatment..What is done to you ...how is it done...do you have to be put under with general anesthesia???? I would be so grateful if you could write about it!!!
Thanks!! I'm so glad you're enjoying your work and feeling so much better physically and emotionally!!
tigerlily
xox
Tigerlily11,
This treatment is so easy to go through.. I have RSD in all four extremities.. and this treatment is for all RSD.. doesn't matter when you have it..
All it is is an IV infusion..of lidocaine and they start you out slowly.. Each day the turn it up until you up to I think its 21 I can't remember.. Your start at about 8 depending on your weight.. In the mean time you still take all the meds you were prior..
Its a five day inpatient hospital stay.. You sleep the whole time.. Its really easy to go through.. probably easier then the blocks..
When you get home you take the pill form.. Which I only took for about two weeks.. I guess some people are different...
Prior to the treatment.. You will need a complete physical.. Blood work etc.. You have to see a cardiologist. Have an echo gram done of the heart.. The reason for this is, the lidocaine does lower you heart rate.. so while staying in the hospital you are on the cardio floor with heart monitors attached to you so you can be watched 24/7.. This is why you sleep so much on top of the meds. The low rate does that to you.. I've had several roommate who were also going through the same treatment.. The who floor of this hospital was going through these treatments.. So I meant so many pts down there while walking the halls. Yes you are able to walk around. Take showers.. etc. Eat normal.. The only reason why you stay in the hospital is to be monitored closely..
When you come home.. You tired for a few days. But PAIN FREE.. Its almost like you wake up waiting for it to happen and it doesn't.. Its really weird.. some pts do need several of these treatments cause the pain comes back within a couple months.. This is why I needed 3 of them.. After the third I seemed not to need it anymore.. Its almost like everything has reveresed and I am slowly getting better.. I still take my neurontin and Sometimes I take tylenol with cod at night.. Thats if I've had a long day at work.. I am sometimes on my feet for over 11 hrs a day with 1 hrs break..
This is why I want everyone to have this treatment.. I went from not walking to back to work working all those hrs.. I still can't believe it lol..
I hope this helps out some.. It is so worth the try if you are able to get it.. You have nothing to lose and everything to gain...
Thinking of you
Michelle
I sent an e-mail over the weekend to Beth Israel Hospital in Boston and they called me back today. The woman told me that their PM clinic does offer Lidocaine and Ketamine infusions. I need to get the paperwork together (refererals from my other docs, etc) and fax it up there.

My 2nd SGB is scheduled for Jan 8 in Boston at a different hospital. My husband and I will both have to take a full day out of work to go there. The first block did work, but only for a little more than 24 hours for some of my symptoms. It's been 5 days and now all of my symptoms are back. The infusions sound like a much better alternative.

My injury is WC, and so far the insurance company hasn't even approved the blocks. I'm sure there is going to be a battle over approval for an infusion as well. But I am delighted to find out that they are available here in southern NE.

Sandy
Hi Sandy,
Good for you for researching and finding out who does the infusions!! I have found that we really have to advocate for ourselves and take the lead in our treatment.
Mine is a WC case also and the insurance has denied certain treatments such as orthotics and orthopaedic shoes ..which is why I'm still wearing flip-flops (I wear them to work with socks !) because no other shoe works for me and is too painful..The next time I go to my foot specialist I am going to ask him where to get them and try and pay for them myself..I was told I can't use my regular insurance for this work related injury....
If you do the infusion, will you use your own insurance or try and get it authorized by WC? and will your WC pain management doc oversee it or your United Health docs? The good news is that you have found somewhere closeby where they are done!!! Good luck with your SGB on the 8th!! It could be the turning point in your treatment!!
Take good care!!!
Tigerlily
There have been so many good responses and replies I almost didn't post but I decided to go ahead and share my experiences with Ketamine, Lidocaine, and SCS. Yes, I have tried all three. I have had RSD for 4 years now, diagnosed for 3. My RSD started with a herniated disc at C4/C5. The C5 nerve root was entrapped and led to permanent nerve injury. In Nov. 2006 I had surgery to correct the disc but unfortunately I had already developed RSD from the injured nerve. In April of 2007 I went on short term disability from my job as a RN because the pain was so severe and I could not take medication at work because they had a no narcotic policy even though I was not providing direct patient care. At first the RSD just affected my right arm, shoulder and neck. In Aug. 2007 I had a Spinal Cord Stimulator placed and by Nov. I was off all medication and was able to go back to work. By Feb 2008 my stimulator was no longer helping with the pain and despite multiple trips to my surgeon and the manufacturer's rep for adjustments we could not get coverage where I needed it. My RSD also began to spread to my chest wall, left shoulder and arm and began affecting my heart rate. The end of Feb 2008 I was hospitalized to get my pain under control and fired from my job because I was put on narcotics again. (Nice of them, huh?) We tried stellateganglion blocks, turning off the SCS for a month then turning it back on. It still didn't help the pain. (Nor has it ever since that time). In Feb. 2009 I found a doc in Dallas that does Ketamine and Lidocaine infusions (they did them one after the other same day) and we set up an apt. (We live 120 miles away.) The first time we did a 3-day infusion. It worked for about a week and reduced my pain by 25%. The second one in March lasted about 6 weeks and I had about a 40% reduction in pain. Unfortunately the last one, in May, helped less than 24 hours and I had only a slight reduction in pain. The infusions are expensive and we used up most of our savings account. Our insurance paid a portion...doctors fees, monitoring equipment, ect. But they did not pay for the medication itself because it was considered "experimental" treatment. The treatments themselves make you feel extremely spacey. At the higher doses there were times I would black out and they would slow down or stop the infusion and I would come back out of it and be extremely confused. I knew who I was but that's about it. I didn't know where I was or what was happening or anything like that. Luckily it clears within 5-10 minutes and then it's over and you feel normal again and they are able to restart it at a lower rate. I'm glad I tried it and I enjoyed the six weeks that it did work. Same with the SCS. It gave me six month with less pain. But ultimately the choice is yours.

Cricket
Hi All,

Haven't been on in a long time the pain in right hand, arm, and shoulder make it to hard to type anymore. I have been having Ketamine infusions with Dr. Prager at UCLA I started the end of July with a 3 day and just had another single day infusion on Oct. 15. I also had the SCS implanted back in March but it stays off since it worked for a month and my RSD pain over rode sadly I now have RSD in my left hip and thigh from where the battery was placed it has been very depressing but I had to try something to get out of pain!! The 3 day infusion worked great I was at a lvl 10 all of the time and after the 3 days I went to a 0-1 for about 6 weeks before it started to creep back up and then my hip thigh started in. The 1 day was not as sucessful no pain relief so we are waiting to hear from Dr Prager what to do next!! Dr. Prager is a wonderful Dr. and very passionate about RSD and his goal is to give you back you life!! If anyone has any questions about Ketamine or Dr. Prager I would be happy to answer them:)!!!

Take Care
Shannon
Michelle, did you have the 5 or 10 day infusion. How often do you go back for booster (more infusions)? Did you have crps1 or 2? i have crps2. most articles i have read are on crps1 and ketamine infusions. it's nice that you don't need as many meds. did you stay on your meds at regular dose while having the infusions? i agree i am new to rsd and i am surprised i havent read more people trying ketamine. did you ever try the scs? thanks for your positive info! Donna





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