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 01-11-2014, 01:45 PM #1
cdwall cdwall is offline
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Default Ketamine experiences?

I was wondering how many of you have had ketamine infusions and if so, how they worked for you? Inpatient, outpatient, number of treatments, boosters??

If you wanted them but didn't get them, why? Was it that they weren't available close to you, insurance didn't pay, or that you weren't a good candidate (and why not)?

Any responses appreciated.

Denise
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Old 01-12-2014, 09:49 PM #2
alaska49 alaska49 is offline
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Default

I have had ketamine infusions since 08 and it really has changed my life. All our responses are different I started in 08 as an out-patient it was 10 days in a row each day upping it until I was at the place I needed I then went to 2 days a week for 2 months then once a week for 1 and a half years which is longer then normal but because of my severity I needed it then it went to once every other week and so on. Now I only get in-patient infusions when Iam in a bad flare which last 3-5 days. For home I have ketamine nasal spray and lozenges which keep my nerves numb so not so painful. I have no bad side affects I went from being in a wheelchair to walking within a reasonable time for my issues. Where i got my infusions out patients he did them 5 days a week and 7 people at a time. I never so anyone else have side affects we just slept the only one person instead of sleeping it made her more happy and wanted to get up and do anything she could. Her it was in the hand and curled up swollan and purple within 2 weeks she was starting to open it and write again. ketamine is now my number 1 treatment at home and when in a flare. My doctor saw how much it helped my pain and made it a protocol for 2 floors for anyone with RSD, MS, cancer, ect. if the nerve pain is to much he will ask them to try it and its helping many, and for surgeries, tests, teeth cleaning its used. But again we are all different and react to it differently.

Samantha
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Old 01-12-2014, 11:03 PM #3
RSD ME RSD ME is offline
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Default

I've never had one, but I know someone who has and is still getting it done in California. She says it's helping her to get off her pain meds. I'm considering it myself depending on how her final outcome with it is. I hope if you try it, it helps you too. Take Care.
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Old 01-13-2014, 09:10 AM #4
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Default Hello Cdwall

I had out patient Ketamine infusions before my last spinal fusion. Both of them gave me a lot of relief for a period of about 4+months each. It didn't hurt to do it, and I had no ill effects. Just some pain relief. If I would have trouble in the future, I would do it again. A little bit scary, but worth it for me, to have that relief. ginnie
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Old 01-15-2014, 03:07 PM #5
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Default Tomorrow is the day

Thank you so much for your replies. I go to the pain specialist tomorrow at 8 AM. I hope ketamine infusions will be an option for me. I'm having a lot of systemic symptoms like shortness of breath, blacking out, inappropriately fluctuating BP, respiration and pulse, and a lot of my body appears to be involved in this very strange disease. I've already been diagnosed with CRPS type 1 and had most if not all of the appropriate tests to diagnose and show the extent of the problem.

Wish me luck
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Old 01-15-2014, 10:13 PM #6
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Best wishes and let us know how it goes for you! We learn so much from one another.
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1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 01-19-2014, 11:46 AM #7
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Default Next on agenda -- sympathetic nerve block

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Originally Posted by Lottie View Post
Best wishes and let us know how it goes for you! We learn so much from one another.
Thanks I think the visit went pretty well. The next plan will be a lumbar sympathetic nerve block. I think this is to firm up the diagnosis of CRPS and as a test to see if ketamine infusions will be helpful, should we go that route. He only does seven day inpatient infusions. I have some other health problems I was worried would exclude me from that ketamine infusion protocol but they didn't think so. They will just have to work closely with my normal specialists (endocrine and rheumatologist) and PCP.

I hope I can get the nerve block soon. I now have hope for some kind of relief and future for the first time in nearly a year.

Denise
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Old 01-20-2014, 07:36 PM #8
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Default ketamine

Ive had multiple infusions.All of them have been outpatient. My insurance will not pay so its out of pocket. mine is blue cross blue shield. I wake up very hard and feel terrible but some do not. It has worked well for me but not for everyone else.Ive had differnt protocols and have mixed results with those. ive had crps since 2010 and we all know what works for one doesnt always work for another....
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Old 01-23-2014, 04:36 AM #9
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I have had Ketamine infusions ~10 times over the last 8 years as a outpatient part of a guanethadine Bier block. Not the most pleasant drug to use in my experience, unsettling is the way I would describe it. My doctor says that was the dissociative reaction to the drug..

On does it help with pain, I can say that it did allow me to go longer between blocks. But it did not cure me so I am not so sure I am keen to try it many more times...

Good Luck with your results...
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