Quote:
Originally Posted by wswells
Hi Dawn, So you did the inpatient treatment of ketamine, was it recommended to you by Dr. S.? Did you have any of the problems that I have read about on hear i.e. the hallutions etc..
Now you say you have had boosters with Dr. S. how long will this continue or are you done, I'm just not understanding I guess are these just treatments that will go on for a long time?
I also loved Dr. S. but have read on the boards that he has changed his ways, when I was there he did blocks everyday for 2 weeks and gave you sooo much pain meds, now if I understood correctly he would like his patients off most meds.
My Dr. contacted him, and he knows whats been going on with me ever since I was up there and saw him, and he told my Dr. that he felt I was too far along with the RSD that he did not feel I would get much relief and possibly aggravate the whole situation with my RSD.
My neuro Dr. told me that I should have no more invasive procedures as I have already had so much. Thats why I had my PM contact Dr. S. and I guess that might be his feeling too.
Thanks for responding, hope to hear back
Wendy
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Wendy,
My primary Dr is Dr. Richman in NY at the Hospital for Special Surgery. He does the inpatient treatments but does not do outpaitent boosters which is why he sent me to Dr. Shwartzman for them.
The inpatient is different for everyone depending on alot of factors. I did have hallucinations, was weaned off all of my opiates and narcotics (thankfully), had lumbar epidural blocks and brachial plexus blocks done to try to see if there could be a neuroma.
Dr. Shwartzman and Dr. Richman share the same philosophy. If the ketamine works for you the first time, keep going and get the boosters as this will continue to keep your CNS calm. I will most likely be getting boosters or going inpatient again at ties for the rest of my life. I had RSD for ten years before it was diagnosed. Thankfully, I had alot of positive factors for ketamine and it did work for me, it doesn't for everyone. One of the things I love about these doctors is they won't give you false hope and if something isn't likely to work for you, they wont lie to you and do it anyway.
As for Dr. Shwartzman's feeling on meds, there's more research being done every day and at this point it's known that narcotics and opiates will actually prevent the ketamine from working. He has prescribed 2 nerve blocks for me so far with a different Dr. there at Hannehman but he's never prescribed any pain meds and thankfully I don't need them since ketamine.
I am truly sorry to hear your story but honestly, as frustrating as it must be, the total amount of meds you're on really isn't bad. If you can get through the day on those without being in horrible pain, that's actually really good. I know the loopy and fuzzy headed feelings and forgetfullness are annoying but alot of that is just RSD and the rest you can get from the meds I do take, like Neurontin.
I think alot of people almost think of ketamine as a cure which it is not. It does help dramatically calm the CNS when it works and reduces pain alot (depending on the individual) and can restore mobility to limbs. However, it is not once and done for most people unless it's within the first three months.
Until a cure is found, rather then keep fighting and stressing the CNS more, I think people including myself need to accecpt that the RSD is here to stay, now it's up to us to find the best way to live with it and hopefully through meds, ketamine, lifestyle changes, etc we'll take charge of it the best we can and if we get a remission, great.
Dawn