It's too bad that you had such an awful experience with your 5 day inpatient ketamine treatment at Hahnemann.
In spite of the risks, I still believe that ketamine remains the best option for many of us with RSD.
Dr. S used to practice out of Jefferson which is a highly respected hospital. What a bummer that he switched.
Many patients have managed to get through the 5 day experience at Hahnemann without incident. But I do know of someone here in RI who was apparently injured by the negligence of a nurse while there - his parents were horrified by the attitude of the nursing staff while he was in what they think is a euphemism of an "ICU." On the other hand, there is another RSDer from RI that just completing his 2nd 5 day inpatient at Hahnemann and will be coming home this weekend. He is reportedly doing really well. He LOVES Dr. S. and would go nowhere else for treatment.
The Hospital for Special Surgery in NYC also has a 5 day inpatient program. The hospital care is supposed to be far better than Hahnemann's. When I tried to get an appt. with the docs they weren't taking new patients - that was a few years ago and things may have changed.
I am sorry that you had such a bad experience. But I still think that EVERYONE that has RSD that has a chance to get ketamine should try it (insurance approval is tough, I had to appeal and appeal and appeal!!!). It is one of the most effective treatments we have available today. Ketamine has really changed my life for the better.
I am so sorry that you are having a rough time, and truly hope you feel better soon.
XOXO Sandy
Quote:
Originally Posted by kathy d
Hi Lori,
I wanted to say hi and to say each person has their own reaction whether good or bad. There are many different ways it seems to have ketamine done. I personally would never do it again as it made me 1,000 times worse than what I was before I started the program. I was down to one cane and on a pain patch. I went in thinking I would have 85% less pain for several months. I was in ICU for 7 days instead of 5 because a nurse there stuck me on the commode and left me and I fell off severely hurting my neck and back. I know the ketamine was working but unfortunately with ketamine you must be very careful and not hurt yourself in any way. The nurse blew my whole treatment. The medicine was scary too. I felt paranoid like the nurses were going to kill me and i had to be nice to them. I hallucinated and pulled ivs out of my arms three times. I remember coming in and out of consciousness. I don't remember the first week at home with family members at all and had a hard time trying to figure out what happened to me. It was horrible and I've been bedridden since Sept 20th when this all started. I had the first booster shot Oct 21st and had to stop it as the hallucinations were terrible and I thought I was dying. I could not take Ativan and had a reaction to it so that is why it was so bad then. I can barely get out of bed and now at 47 years have been looking into going to a nursing home. I am trying to stay in my home and have helpers come to my home each day. I know I would never have it done again because it made me so bad and I feel if I didn't fall I would have had a better outcome. Also, the more you sleep the better the ketamine works in your brain. No one ever told me or my family that so I wanted you to know that too. Best of luck with whatever you decide to do.
kathy d
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