Quote:
Originally Posted by debbiehub
Dawb,
I had my ketamine infusion with Dr Richman at HSS. He was great as was the staff. You are in good hands there! It did not work for me but I did not have the burning or sensitivity at the time - which is what ketamine works best on. You will not be able to do PT during the tx. You will be in bed with a catheter. Most of my experience was fine. I was tripping but it wasnt scary. I did make some phone call in the middle of the night to family- no idea how I dialed them but I did....IF you have any questions. please ask
Debbie
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Quote:
Originally Posted by Truffle
Hi, I am very newly diagnosed with RSD and am researching the ketamine infusions. I got a copy of the ketamine docs list and in particular was interested in the NYC area possibilities [I am out of state so am exploring what sound like the best options, I guess wherever I can get in?]. I have read old posts that HSS was not taking new patients, but is that not the case if you [Dawn] are scheduled for an upcoming infusion?
I'm looking for some basic guidance for how to go about this -- such as, I have heard good things about HHS and St. Luke's, a few nightmare stories about Philly, and that's about it; which others should I look into?
I have a consult scheduled with Dr. Kirkpatrick in Tampa to discuss the three-day outpatient infusion, though it sounds like those done in NYC and in Philly are 5-day in-patient, so I'm not sure what to pursue? Anyone had success with that particular treatment or know of anyone who has gone to the RSD Institute?
Do I just need to start calling and see if I can set up an initial consult? I also read on other posts how people had submitted applications to get on a list? I'm not sure of the protocol for making this happen.
Anyway I'm rather ignorant of how to proceed so any suggestions would be helpful. Thanks much!
T.
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Hi T,
From what I have heard and all my research told me, Dr. Richman and Hospital for Special Surgery is the best of the best in NY. I actually live in PA but travel to NY for Dr, Richman and am happy to do it. I actually got in to see him by accident in a way. I had scheduled an appt with a neurogist there before I was dx with RSD amd had hoped to get helped with what I thought was failed neck and back surgeries. As soon as the neuro had spent about 15 minutes with me, he walked over to Dr. Richman's office to see if he could see me immediately. Both Dr's were apparentely shocked that none of my former DR's had ever diagnosed me with RSD as they felt I was severe and rapidly deteriorating.
So, that's kind of how I got lucky and got into see Dr. Richman. The severity of my condition is what I supposed got me bumped up so quickly for the infusion date. Dr. Richman also made the contact with Dr. Schwartzman for me for the boosters and his staff really has handled things incredily well and quickly.
SO..if you can't directly get an appt with Dr. richman, perhaps try settiing one up with someone else in their department at HSS fiirst?
I do also hear Dr. Getson is very good and I have also seen quite a few other's mentiuoned in these forums.
Best advice I can give you is to be persistent, be your own advocate and fight for an appt like you're fighting for your life because frankly, you are fighting for your quality of life if nothing else.
Wish you all the best,
Dawn