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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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02-25-2011, 07:31 PM | #11 | ||
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02-26-2011, 01:25 PM | #12 | ||
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Hi Byates,
I can't say one way or another about Dr. Kirkpatrick but I had the same treatment as Gabbycakes and very similar to SandyRI and cannot recommend Ketamine highly enough. My biggest concern with Kirkpatrick is it doesn't sound like it's affordable or much of an option to do boosters and I can tell you without a doubt what makes or breaks my treatment is the boosters. My initial 5 day inpatient treatment was in NY with Dr. Richman who truly is an amazingly kind and intelligent man who truly wants to help people and cares. My insurance covered the entire hospital stay but like Gabbycales, not his daily visits, it was still cheaper then Kirkpatrick and frankly, I don't think your daughter could be in better hands. I have three children and I would trust their lives with Dr. Richman. I still see Dr. Richman for follow ups and would possibly do inpatient with him again if necessary since my RSD also took 10 yrs to diagnose and spread through my entire left side. In the meantime, Dr. Richman consults with Dr. Shwartzman in Philly and I get my outpatient boosters there. I can honestly tell you, when I get my boosters, I feel like I did before this monster of a disease got it's hold on me. The only thing is, without regular boosters, it will come back. Right now is the longest I've gone without a booster and I am feeling it and desperately awaiting my next booster and realizing I need to speak with them about shortening the length of time between boosters. Key point here is, it cannot be "one and done". You really do need to look into your options, consider the financial aspects, do find someone within a reasonable distance of home for the boosters and see if your insurance will cover ketamine. I know United Healthcare does, Aetna does not (that's what I have, lucky me). If you want an absolute honest opinion on what would be best for your daughter, I can say without a doubt, Dr. Daniel Richman at the Hospital for Special Surgery in NY is the one who would give it to you. He's truly not in this for the money and if he doesn't think it would help, he'd tell you flat out. If he thinks outpatient with another doctor may work better, he'd tell you that too. I truly can't recommend him enough. If you have any questions, please feel free to message me by right clicking on my name. :Hug: Dawn Quote:
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02-27-2011, 01:58 AM | #13 | ||
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Dawn is there a long wait to see Dr Richman? Thank you for sharing your experience and I am glad you feel benefits.
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02-27-2011, 11:04 AM | #14 | ||
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Daniella -
I don't think so. I actually got in to see him in a round about way. I called the hospital's Dr referral line and they thought I should see a neurologist there. Initially he couldn't figure out why I was sent to him but as he started doing some basic tests on me, he picked up on the RSD immediately and called over to Dr. Richman to get me in for an appointment. Dr. Richman is an anesthesiologist and does do pain management. He only treats two RSD patients in the hospital per week as he does keep a very close eye on them. He doesn't do any outpatient boosters. If anything, it may be a little bit of a wait, but nothing at all like Dr. Shwartzman. My first appointment was within 3 weeks of the other doctor contacting him. Dawn |
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03-01-2011, 04:19 PM | #15 | ||
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Sandy, I would really like to speak with you about your daughter response to the Ketamine. How do I PM you my number. |
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03-01-2011, 04:23 PM | #16 | ||
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03-01-2011, 04:25 PM | #17 | ||
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( phone # removed Please contact via PM to share personal info) My name is Belinda Last edited by Jomar; 03-01-2011 at 06:01 PM. Reason: personal privacy = public forum |
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03-01-2011, 05:55 PM | #18 | ||
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Wishing you and your daughter the very best...Sandy |
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03-04-2011, 10:31 AM | #19 | ||
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Can I ask about the boosters? How many days? In patient or out and for how many hours? Everyone is different and I am curious to see what is working for you.
Last I checked, Dr Richman was only taking patients who lived in NY. Liz |
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03-04-2011, 01:26 PM | #20 | ||
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I do my boosters on an oupatient basis, 2 days in a row, 200 mg each, every 4 weeks. It typically takes 4 hours for the infusion to run (50 mg. an hour). My husband drops me off at 7:30, my IV is in by 7:45, and I am done by noontime. My husband picks me up at 12:30. Occasionally I've developed migraines or nausea afterwards that may keep me there a bit longer...
I used to get less ketamine each time (I started out at a lower dose), and I've tried getting ketamine one day at 3 week intervals. The 2 days in a row at 200 mg each works the best for me. It is actually Dr. Schwartzman's protocol...except he advocates that after a few intervals you can go up to 3 months without an infusion. I really don't think I can do that, because I can feel it wearing off each month. XOXOX Sandy |
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