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 04-22-2010, 07:26 AM #51
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Originally Posted by Skooz View Post
I have great empathy for your desperation in wanting to try the Ketamine infusion. I do not have experience with either Dr. Schwartzman or Dr. Kirkpatrick because I live on the West Coast. However, I did undergo a seven-day out-patient Ketamine infusion in June, 2009 that was sadly unsuccessful. My Pain Management Specialist began offering Ketamine infusions in January, 2009. To date, all of his RSD patients with the exception of me have received benefit, ranging from limited to significant.

Expense was a consideration, as none of my procedure was covered by my insurance. I paid $12,000 out-of-pocket. My doctor wrote off $47,000 in charges by the two other anesthesiologists who performed the procedure because he had compassion for our family, as my husband had recently joined the unemployed and I am disabled.

There is a strong alternative to the Ketamine infusion that I do not see mentioned in NeuroTalk and that is oral Ketamine. Perhaps it is not mentioned because most everyone is already taking it. If you are not, I recommend that you ask your doctor about it. Inexpensive, it can be compounded by any compounding pharmacy and is believed effective because it works on the NMD-A receptors. I believe my monthly cost is $68 per month. There are two research studies supporting oral Ketamine, one done in Australia with RSD patients in the mix of subjects. One neurologist with whom I consult refers to it as "the gold standard" for RSD treatment.

If you have not tried oral Ketamine, you might discuss it with your doctor.
It has been covered by my insurance and has made a significant difference in my pain management.

Best wishes to you!
Thank you!! And great thought...oral Ketamine.. Most recent for me is my Ortho., who oririnally performed my knee surgery has stayed in the loop..He is now going to bat for me with my ins. company...thought being the $ saved by doing the 5 day sleep rather that the $ used for pm care otherwise..I haven't much hope he will prevail but I appreciate him taking an interest...Life should not be so hard for us sufferers!!

Hugz and have a wonderful day!

Kathy
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Old 04-22-2010, 10:55 AM #52
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I wonder why oral ketamine is not used or suggested more? I have not read about that many people trying it and I have never been suggested it. I wonder why even Dr S or Dr K don't start with the oral first to see results? Thanks or that suggestion about the oral
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Old 04-22-2010, 01:05 PM #53
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The impression I get with Ketamine is the dose amount. This is my experience only. It seems the larger the dose (over time) the better it works. My wife, who has RSD, was receiving single shots of ketamine once a week for months from her doctor. She got no relief. Soon after she had the ketamine infusion at a local hospital, 4 day, 4 hour infusion with no luck. Not knowing the oral dose and assuming it maybe a low amount it might be the reason it's not taken off. Having said that I've heard of many who have had ketamine coma and 10 day infusions in which they received oral boosters of ketamine.
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Old 12-04-2010, 05:56 PM #54
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Originally Posted by wswells View Post
HI Daniella, I have seen and been treated by both Dr.'s. Ican tell you that they both have certain ideas of how to treat an RSD patient. Dr. Kirkpatrick definely had his own way of doing blocks {because he did them himself] and with the kind of medicine he would use,period. He was definately not one of my favorites. He seemed to just treat the problem that he thought you were having,even if at that point you needed help with another area. As to Dr. Schwartzman he is the kindest most caring Dr. I have seen except the Dr. I have here in Florida, But Dr. S. is also pretty set in his ways too. I believe that his big thing is sending people with severe RSD to Germany for the Ketamin coma. That whole coma thing scares me. Well I know how draining it is to find the right doc, heck it's draining to have RSD let alone finding the right treatment for yourself. You just have to keep on trying to find who and whats the best for you. Your friend Wendy
Hi wswells,
Can you tell me where Dr. Schwartzman is? I live in CT but an willing to travel anywhere to get some relief! ty!
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Old 12-04-2010, 07:52 PM #55
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Hi wswells,
Can you tell me where Dr. Schwartzman is? I live in CT but an willing to travel anywhere to get some relief! ty!
Dr. Shwartzman is in Philadelphia. I did my 5 day in patient in NY with Dr. RIchman but I now am doing my outpatient 200mg per day booster infusions with Dr. Shwartzman in Philly.

Feel free to PM if you have any questions.

Dawn
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Old 12-04-2010, 07:55 PM #56
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Originally Posted by Jimking View Post
The impression I get with Ketamine is the dose amount. This is my experience only. It seems the larger the dose (over time) the better it works. My wife, who has RSD, was receiving single shots of ketamine once a week for months from her doctor. She got no relief. Soon after she had the ketamine infusion at a local hospital, 4 day, 4 hour infusion with no luck. Not knowing the oral dose and assuming it maybe a low amount it might be the reason it's not taken off. Having said that I've heard of many who have had ketamine coma and 10 day infusions in which they received oral boosters of ketamine.
Honestly Jim, from what I have heard from both Dr. Shwartzman and Dr. Richman, it's more about continuing booster infusions and following a protocol that keeps you getting them for at least 6 months, spaced out in the end to once in three months then anything else.

It appears it's more about training your body over a period of time to respond to it.

I don't know for sure but I've been doing it since November 1st and haven't felt this great in 10 yrs.
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