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 08-27-2016, 04:54 PM #1
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PurpleFoot721 PurpleFoot721 is offline
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8 yr Member
PurpleFoot721 PurpleFoot721 is offline
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Join Date: Sep 2015
Location: Near Oscoda Michigan
Posts: 469
8 yr Member
Default Starting Ketamine

Hi everybody,

I was just catching up a little with what everyone has been posting lately and decided to share a post of my own.

I recently posted about my recent failed SCS trial and my disappointment that I have had with my doctor and his team during the time I was going through the trial. After speaking with him, other members here who have been through ketamine infusions, and doing some personal research, I have decided to go ahead with the 5 day outpatient infusion that he is suggesting. I will be starting on September 12.

Last Wednesday, I let my PM know how disappointed I was when I went through the SCS trial and how difficult it was to get in contact with him when I was having a problem. I am not sure if it is a good thing or not, but he is now convinced that CRPS can spread. This is something that he did not believe happened before me. Unfortunately, this learning experience for him had to come at my expense as the CRPS has worked its way up my right leg, and is now starting down my left. Although he does not believe that the ketamine will be of much help for my right ankle and foot, where the CRPS began, he does feel that it will lessen the symptoms that are a result of the spread.

The only thing that my PM feels will provide any relief at the original site is Intrathecal Prialt, (Ziconotide), due to the length of time that I have been showing signs of CRPS, and the severity of my case. I honestly don't think my case is really all that bad. Perhaps one of the most severe cases he has seen, but I know that some of the members here are in far worse shape than I am. Before I decide to go that route, I would prefer to do some more research and try some other less invasive methods. What I am finding though does seem rather promising, but it is another procedure that could cause further spread or a more intense flare.

I am getting a little off topic,so back to the Ketamine.

The week of September 12, I begin a 5 day outpatient Ketamine treatment. I did not ask what dose he starts at, but I do know that he will titrate the amount of Ketamine to 1 mg/kg. He recommended that I bring a book with me as it takes around 4 hours each day, but from what I have heard about the experience of other members on here, I am likely to just want to close my eyes and relax, especially since there will be Versed mixed in to help me do just that. I will have a pair of headphones and my phone that has a few playlists to help as well. I do not know if a PA keeps an eye on me, or a nurse while the Ketamine is administered, but the PM will check up on me briefly at least once every day. My biggest concern is having an IV started every day for 5 days straight.

Anybody that has had an outpatient Ketamine infusion, do you have any advice to give, any questions I should ask, or anything that I should be aware of before going in? I would like to hear the experience of anyone else that has gone through this as well. Even if I know your story, new and old members come and go on this site often, your posts may have been missed by someone else that may be interested in it.
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Alaina
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