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Old 12-01-2010, 09:33 PM
SandyRI SandyRI is offline
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Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
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Hey Mike -

I hurt myself in Nov 2006, so I just passed the 4 year mark. I wasn't diagnosed until June of 2008.

I started out my ketamine treatments with the 10 day protocol, but at less than 200 mg. per day. I didn't get up to that dose until my 26th or 27th infusion. I believe I was at 150 mg. most of the time, but I'm not certain because my doc's practice was to not disclose the dose to his patients. I weighed about 120 lbs or so when I started the infusions, and lost some weight during the the first few months.

I began my treatments with Dr. Getson in South Jersey, who followed Dr. S's protocol. I did the 10 days (with the weekend off), then 2 days a week for a month, then I did 2 days every other week for a month. Then I went to 2 days a month. In late July I was ordered by the RI WC Court to begin treatments here in the State, with a local doc who had just been licensed to perform the infusions, and I began to get my infusions once every 3 weeks. My doc has just decided to start trying 2 days in a row once every 4 weeks. I will begin that in December. Since April 19th I've had 28 infusions.

My pain has improved quite a bit. It is not perfect. But I am off the morphine (Fentanyl) and rarely take any oxycodone. My biggest complaint has to do with migraines, which I never had before I had RSD. I have other drugs that I use now to try to control my headaches.

I still notice weather changes, but nowhere like before. And I have to be careful how I use my arms and will always have trouble lying down on my head. Generally, I'd say that ketamine has reduced these issues about 80% for me, such that my pain is usually about 20% of what it was. And sometimes, on really nice days, my pain can be at zero. Right now I'm close to 3 weeks out from my last infusion, by the time 4 weeks rolls around I might be down to a 50-60% reduction in pain. I can't remember ever going back to where I was before I started the treatments. It's all been GOOD!!

I don't have much of a tremor or other movement disorder, so I can't respond to your second question.

Neurocognitive - I think I am slowly improving since I started the ketamine. I was the worst about a year and a half ago - I could barely have a conversation because I couldn't remember the name of ANYTHING!!! I'm getting better. Reducing the meds helped. Feeling better so that I could move around more also was a big help - I am a big time walker. Going back to work has been great for my brain. But I do continue to experience memory loss issues, etc. I am not like I was before. But everyday that goes by I think I get better and better.

After the 10 day protocol, my first month consisted of 2 days every week. And after that it was 2 days every other week. Then we started to spread them out because I was doing well.

I've tried many other treatments - tons of different meds, 8 stellate ganglion blocks, a lumbar block, 8 lidocaine infusions, and the results from the ketamine infusions were profoundly more effective than all of them put together. I still take Cymbalta, Topamax, Clonodine, Skelaxin, Ambien and Fiorcet. And I put Lidoderm patches and Voltaren gel on my sore spots.

I sincerely wish you well. It is truly awesome that more docs are offering this treatment. Please let me know if you have any more questions.

XOXOX Sandy


Quote:
Originally Posted by fmichael View Post
I am curious about the experience of people - especially those with chronic (> 3-4 years) RSD/CRPS - who have had what I understand to be Dr. Schwartzman's current ketamine protocol: ten 4-hour outpatient infusions over two weeks, with 200 mg. of ketamine delivered through the infusion process, along with other medications.

Specifically:

1. How much and for how how long did it help with your pain;

2. Same question with respect to movement disorders;

3. Same question with respect to any perceived CRPS-related neurocognitive issues; and

4. How often are you returning for booster infusions and how well do they seem to work?


There is a decent chance my pain doctor's hospital is going to allow him to use this protocol in Los Angeles, and if so, he and his hospital would be accepting insurance reimbursement as payment in full, less whatever co-pays might apply. (Which I believe would be a first for LA.)

So inquiring minds want to know. Thanks.

Mike
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"Thanks for this!" says:
fmichael (12-02-2010), wswells (12-02-2010)