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 05-13-2015, 06:20 PM #11
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Thanks everyone for all the tips and encouragement! I will take soft music and my honey will be there with me. I am sure they don't want me hallucinating and pulling my IV out so will treat accordingly. It is a relatively low dose. I will find out how much and post. The infusion is 1.5 hours long. He said this works for most of their folks. This doc seems flexible about the frequency depending on my response which I appreciate. I am little like my name and may not need as often as some people to start. If I need more we can bump it up. He did say not everyone responds to the first infusion and may take the next one to tell anything. I will post an update when I am not too goofy, was told I will sleep a lot. I could use a nap...
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Old 05-14-2015, 11:09 PM #12
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I'm so happy for you. I wish you all the best!
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Old 05-15-2015, 06:13 AM #13
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Wishing you the very best Littlepaw. You have every right to it!
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Old 05-15-2015, 10:32 PM #14
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Three more days!!! We're rooting for you and hoping for good outcomes for you!
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Old 05-15-2015, 11:37 PM #15
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Default LittlePaw - anxious to hear your results

My daughter - age 15 - has CRPS in her left ankle and the pain is very serious along with discoloration, coolness, and skin texture changes. Tried the nerve blocks - the pain management doctor said up to three to see if possible help, after three we see no benefit. So, now looking for alternatives. Have seen many references to Ketamine treatments, but most seem to much more intensive (over several consecutive days) than what I have seen described here. We are in Austin as well, so depending on how things go might want to know what doctor you are seeing. Good Luck
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Old 05-16-2015, 08:00 AM #16
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Welcome to the forum fellow Austinites. I am so sorry your daughter and family are going through this! Try to stay hopeful and remember that children and teens have the best odds of beating this thing. They are actually quite high in her favor per literature. Get that girl in the pool as much as you can and doing plenty of gentle exercise as tolerated, exercise bike, etc. Keep that sluggish blood movin' to remind the nervous system what to do with it.

Heck I say go ahead and look into all your options. It never hurts to get information. You can always keep info in your back pocket and choose later whether to use it. Ketamine is really pretty safe, used frequently in ER and other settings for anesthesia since you don't stop breathing on it even in higher doses. Don't worry about how it goes for me unless the staff is flat out cruel and incompetent which seems unlikely. We all respond differently to different treatments.

Dose is 0.5 milligrams per kilogram. A low easy start to see how I react and if that works for me, why give more than necessary? I like that the treatment seems a little tailored to specific needs. I was wrong on the cost, it is even less. Doc said 400 but billing called and told me 300!

Capitol Pain institute on Shoal Creek. Dr. Schocket started the clinic but ask who has the most experience with your daughters age group. They may have another recommendation for PM for teens.

Sending Healing Love and prayers, Littlepaw

Last edited by Littlepaw; 05-16-2015 at 02:28 PM.
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Old 05-17-2015, 05:05 PM #17
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I found LDN increased my pain. I thought it was useless and quit after a few months.
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Old 05-17-2015, 05:12 PM #18
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Littlepaw,

Only a few hours to go, wishing you all the best.

Dave.
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Old 05-18-2015, 04:52 PM #19
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Thanks so much to everyone for the support. It was nice going in with that. I am all done and no more goofy than usual. Took a nice nap with my kitty when I got home. The ketamine infusion was easy and pleasant. They put in a little versed so I was relaxed.

The music suggestion was really helpful. It blocked ambient noise and gave me something to focus on. I put my mind in the pleasant direction of thinking about places I have been where I felt really good. This seemed to work well and I was calm and peaceful. Overall, no problems, no nausea, no weirdness. Yeah!

I don't know if these will work as I hope but I do know it is cumulative and it certainly wasn't difficult so I will go for the next one and post results when I feel there is something to report.

Sending Healing Love, Littlepaw
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Old 05-18-2015, 05:59 PM #20
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It had been so may years since I had been pain free that I started laughing and crying when I had my first infusion because it was so shocking to feel normal. It made me realize even when I have other forms of anesthesia I'm never truly pain free.

Did you feel major relief?
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