What is Reflex Sympathetic Dystrophy
Complex regional pain syndrome (CRPS) is a chronic condition characterized by severe pain following injury to bone and soft tissue. The International Association for the Study of P...
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Ketamine Infusions
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I have had RSD/CRPS for 18 years in my arms (from fingers to shoulders) and in my knee for 9 months. I have had many sympathetic blocks over the years and months and while they did some good, it was definitely not the magic bullet. Recently, I was diagnosed with blood clots (DVT) and pulmonary emboli (PE) due to surgery (I also had a spinal cord stimulator in that needed to be replaced, and as a complication, not only did I get a staph infection, but also the DVT's and PE's). So, the stimulator had to be removed after it was replaced two weeks prior. Due to being on blood thinners, I am not able to have any more blocks. I could do it, but I'd have to be off the blood thinners for 7 days, and the risk outweighs any benefit the blocks would give, so this is not an option for quite a number of months (November).
So, my Drs. are talking to me about doing a Ketamine Infusion on an outpatient basis. It is done for five days. I spend about 5 hours in the clinic the first day so that they can adjust my dose and then I go home with the IV (I will have a central line as I do not have the veins to support an IV for 5 hours, forget 5 days!). It is hooked up to a pump that will give me a set amount of Ketamine per hour. If I need adjustments, I will go back to the clinic for adjustments in the dose. Once I have pain relief, it continues for 24 hours and is then discontinued. I am looking for anyone that has had this done and the results. If you haven't had it done, has your MD discussed this with you? Thank you so much! Robin Posted on 07/10/09, 08:07 am |
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Good morning, Robin:
I am a RN working in the position of practice specialist. I have been reading emails from nurse educators who belong to the CHCA (A children's hospital consortium) who are inquiring about ketamine protocols and use in the pediatric population. We at the moment do not use this medication but the hospital has several specialties where the children are quite ill with chronic pain so I am trying to learn about the process. I think that you might try MedMD and spring out from there. Also a thorough google like search might help. Good luck to you. Kate in south Texas 
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Hi Kate....
Thank you so much for your help! I have tried Google and found some information and even spoke with a Physician who does Ketamine Infusions in PA. I am going to go to MedMD now and see what I can find. I did try WebMD, but didn't have a lot of luck there either....maybe I was not looking in the right place. As of right now, we are scheduled to start the 5 day infusion next Monday, August 17th. We are waiting for the authorization to do this. Please, keep your fingers crossed for me that this will go as planned! I am getting desperate. My Spinal Cord Stimulator had to be removed due to the Staph Infection, and the blocks, while they give some relief, has not been the magic bullet for me :(. The pain is slowly but surely getting worse. Thank you again, Kate, and I will definitely keep you posted on how things go if you'd like to know (It's okay if you don't ;)...). Pancisgone
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Hi from Kate, It seems like it is still August. How have you been? Did you have the ketamine infusion? Did it work? Even if I don't check in too frequently I do think of you. I confess I have been somewhat preoccupied...I tore a rotator cuff in my right shoulder... zowey what a miserable thing that is! But no match for feeling like you. write back I hope you are better. Kate in South Texas
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Hi Kate,
I am brand new to this site. Was diagnosed with RSD in Sep of 2007. Am in the San Diego Area. There's a doc up at UCLA that does the infusions. I see that you were going to have ketamine in August. Did you receive the infusions? How are you doing? How were you when you woke up? It's so very frustrating to me -- All the RSD treatments; i.e., the blocks, the SCS, all the meds that are weight gainers - Nothing has a real long term fix it seems. I'm also VERY frustrated because the ketamine isn't covered by insurance because it's "experimental". UCLA charges 2K each treatment so who in the heck can afford that? I also understand that Dr. S in Philadelphia is putting out a research paper that should encourage insurance companies to help pay for the ketamine infusions, which will help many. The fact that none of these treatments have any long term benefits (none to date, that is) is downright scary!!!! I work 15 hours a week in a 7th grade classroom and I'm grateful that I'm working. I feel blessed to have an RSD specialist here in San Diego. However, my pain has slowly increased since I was diagnosed. It began in my left foot (I had a ruptured plantar plate from walking for exercise) and it's jumped to my right foot & it's in both legs. I really work hard to have a positive attitude and good outlook but there are times I become scared to death. Does anyone else experience these kinds of feelings and emotions? It's very late and we're headed to a Padre game tomorrow so I need to run. Hope to hear from someone soon, Deb
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