Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-21-2016, 04:27 PM #11
Shay08 Shay08 is offline
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Quote:
Originally Posted by kservello View Post
Hello all, I have been researching ketamine treatments and can't seem to find anything about it being done as an in-patient treatment. My PM wants to put me in ICU for a 5 day infusion. He said he has only done 5 treatments and has only had 2 patients say their pain was gone, the other three say it came back "with a vengeance". I can't understand why he is the only one doing this as in-patient?????? Has any one heard of this?
Hi kservello,

Your PM is not the only one doing this as in-patient. I may be a bit overly cautious, but I would hesitate to have this done by a doctor who has only done it on 5 patients. You may want to inquire about his training to use it. If he trained in a facility that used it frequently then that is a different matter.

I received relief from the pain of CRPS starting with an outpatient 10 day infusion. I now continue to get 2 day booster infusions every 3 months. I have had brief remissions, but the pain does return, especially close to the date of the next booster. I will not say that it returns with a vengeance, but it increases. The worst pain came when I had to wait over 5 months for a booster, but the booster took it away. It has been worth it to me. I have talked to others who have also experienced relief from the infusions. Some started with a 5 day inpatient infusion and others like me started with the 10 day outpatient.

You will find some studies on the use of ketamine at the following link:

Peer-Reviewed Journal Articles About CRPS/RSD and Related Syndromes | RSDSA

Scroll down and look for Ketamine Treatment in the right hand column.

Good Luck

Shay
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Old 10-30-2016, 11:01 AM #12
kservello kservello is offline
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Thank you for the information, I really appreciate it. It is hard to find people to talk to about this awful condition😢
Quote:
Originally Posted by LovesTerriers View Post
Hello Kservello,

I have undergone a 7 day inpatient ketamine infusion in ICU. Prior to that, I was receiving out patient infusions, which were helping my pain, but only for short periods of time (up to 2 weeks max). I traveled from Nebraska to North Carolina on the recommendation of my PM (and I had done quite a bit of research and had gone there for an initial consultation). The reason an inpatient infusion requires someone to stay in ICU, is because ketamine is anesthesia and has many risks, even at low doses.

Personally, I did not benefit from the treatment. In fact, it was a complete nightmare. They started me at 20 mg/hour and after 2 days I was up to 200 mg/hour for 7 days(fyi..I am 5'7" and weigh 125 lbs). I was told I would be able to eat and converse. Nope. I was confined to my bed, could barely find the button to push for the nurse to "bed pan" me, was unable to eat (besides a Ensure nutritional drink every so often), I was hallucinating wildly, as the only drug they gave me to control hallucinations was Ativan, which did nothing. When I got outpatient infusions I received Versed and had no hallucinations. I really did not get all of the facts up front, and should have asked more questions on the medications I would be receiving. I seriously thought I had died and was living a "Groundhog's Day" type of purgatory each day. Finally, on the last day when they stopped the ketamine and asked if I wanted to try to get out of bed and walk and was so relieved and wanted to run out of that hospital.
I did get some pain relief for about 6 weeks, however, my symptoms of insomnia and night sweats persisted. After the 6 weeks, the pain did come back with a vengeance. I know some doctors and programs have patients go through boosters a few weeks after, then a month, 3 months, 6 months, and so on. The doctor I was seeing did not believe in boosters. I did re-start my outpatient ketamine infusions with my local PM, however, they became ineffective and no longer provided pain relief.
I am now looking at other options for pain control. Options I thought I would never consider, but I am at my last resort for pain relief, as I need to have hip surgery on my CRPS leg and the surgeon will not do it until my CRPS is under control. Kind of a "catch 22" of sorts.

I hope this helps. I have heard that inpatient ketamine infusions can work for some, but I believe I read the statics in Pain magazine was 25% go into some type of remission, 50% require boosters and continued infusions and 25% receive no benefit at all. Good luck and really do your research. Ask A LOT of questions.
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Old 10-30-2016, 11:03 AM #13
kservello kservello is offline
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Default Thank you all!

I appreciate all the information more than you know! I will definitely be doing more research and making this decision very carefully! Thanks again.
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