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 10-18-2016, 01:05 PM #1
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Question Ketamine as outpatient? PM wants to put me in ICU for 5 days?

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?
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Old 10-18-2016, 03:46 PM #2
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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?
I'd be much more concerned about the "with a vengeance" rather than the Ketamine itself, TBH. I'd ask the doctor what was done with those patients then to treat and manage their pain, and whether or not it was successful or not. It might potentially be your future too. So. I'd be asking a lot more questions to the doctor himself before even agreeing to this. Only your doctor is going to be able to answer you, I think.
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Old 10-18-2016, 06:06 PM #3
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I've heard of in-patient ketamine treatments...so he is not the only one who does this. I don't have much advice to offer about the treatment itself because I haven't had it done. What I will say is that if you don't feel comfortable...don't move forward until you do. The doctor will, most likely, not change his protocols for you...so you either need to ask those questions and see if you are comfortable with this procedure or find another treatment option or doctor. Do not feel pressured into anything you don't want to do. All treatments come with risks and especially with CRPS...there are no guarantees...so you need to accept that there are risks and while we always go in believing the best...understand that those risks are a reality. Complications happen...pain may not get better...pain could get worse...or you could go into remission...the pain could be cut in half...etc. Only you can decide if this is the right thing to move forward with for you.
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Old 10-19-2016, 12:50 AM #4
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I had to cut myself short earlier...mom duties...but I also wanted to make a comment regarding the pain coming back "with a vengeance" comment. I don't know about you guys...but if I went back in time to before I got CRPS...and I felt this pain that I feel today...it would probably knock me out...unconscious. I actually feel blessed that I DIDN'T go into remission during pregnancy because I cannot imagine the pain going away for any length of time...and then coming back. It could ONLY be described as "with a vengeance" in my opinion because it IS so severe...it's just that it has become the "norm" for so many of us and we never get relief from it. But imagine you did...and then it came back? So, in my opinion, I wouldn't get too hung up on that particular description because if someone described this pain coming back after relief as anything less than that...I would be skeptical about how severe their pain really was.
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Old 10-19-2016, 05:11 PM #5
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Hi K,

We have a member who receives inpatient ketamine infusions. She gets a low dose "awake" sub-anesthetic technique that might not necessarily require ICU, I'm not sure of her level of care. She posted a video of her inpatient infusion in which she very eloquently explains everything going on. Her ability to do that is based on the low dose of ketamine she receives. Here's her video.

Ketamine Booster Video Blog for CRPS

I am wondering, do you need to be in ICU because you'll be on high doses and need potential breathing support? Or because of the need of constant monitoring? "Inpatient" could mean different things as far as the dose being given. What Inspiretoday gets looks very do-able. A higher (anesthetic) dose over several days would carry high risks.

I am not trying to dissuade you from treatment that you and your doctor think best. I myself get outpatient ketamine infusions and have had good results. I just want you to be informed about how much medication you'd be getting, what is involved and what the risks are. I am attaching a summary about ketamine treatment options from RSDSA which goes into the different techniques. There might be protocols that would be less intensive and still allow you to see if ketamine works and is tolerable for you.

Ketamine and CRPS or RSD - American RSDHope

I hope you find relief soon!
Sending hugs and thoughts of healing,
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Last edited by Littlepaw; 10-19-2016 at 07:45 PM.
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Old 10-19-2016, 06:29 PM #6
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Could the ICU reason be due to a K coma inducement?
I think I read of that awhile back... Do they still do it?
I would think possibly an in- hospital general room, just in case with a first time K therapy..
Maybe the PM is thinking high dose & coma?

You'll have to ask for clarification from PM.. details of this plan.
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Old 10-19-2016, 07:32 PM #7
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Quote:
Originally Posted by Jo*mar View Post
Could the ICU reason be due to a K coma inducement?
I think I read of that awhile back... Do they still do it?
I would think possibly an in- hospital general room, just in case with a first time K therapy..
Maybe the PM is thinking high dose & coma?

You'll have to ask for clarification from PM.. details of this plan.
Thanks for that Jo*mar, but a ketamine induced coma is still not legal here in the US. As far as I know, they are still only done in Germany, and Mecico.
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Old 10-19-2016, 07:36 PM #8
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Right, Ketamine coma is not approved in the USA.
I am hoping that K's doctor is looking at lower inpatient doses. Coma technique would require breathing support and feeding tubes. It would really be something to recover from with high risks (infection, liver toxicity, etc.) even if it was approved.
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Old 10-20-2016, 07:49 PM #9
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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?
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.

Last edited by LovesTerriers; 10-20-2016 at 07:50 PM. Reason: name wrong
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Old 10-21-2016, 03:11 AM #10
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Quote:
Originally Posted by LovesTerriers View Post
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.
OMG this sounds like a true nightmare. One of the reasons why I won't consider it.

I hope you can get the CRPS settled down enough for the surgeon to want to do the hip surgery.

Best of luck to you!
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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