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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi Sandy,
It's pretty late right now - Very hot in Southern California and the heat will continue all weekend. :cool:
How are you doing? I'm hoping that ypur ketamine gets WC approval. I saw that you're going to Dr. S in Philly in 2010 -- I've seen th at before -- Those very long waits, I don't understand. I've never known any doctor that takes 2 years to get in. I've heard lots of great things about him though.What did Dr. Hertz say? Infusions are the only way they do it, right?
Sometimes I want the ketamine because I don't want to be sick anymore either. I'm very unhappy with my weight. I'm fat, plain and simple. Mostly because of the RSD medications, and also because I'm no longer walking for exercise.:(
Keep me posted, ok? I think that if someone on the board does it, then perhaps more of us will be more likely to try it.
You take good care Sandy, ok? Will wait to hear from you.
:wave::wave:Rose =Sandy325;4085257]It's been a while since I posted on this board. I wanted to jump into this conversation because it is really pertinent to me right now.

Deb, I am going to NYC tomorrow to St. Luke's/Roosevelt Hopital for an evaluation by Dr. Ronny Hertz, who does ketamine. My RSD started in my shoulder after 2 surgeries and really aggressive PT, then spread to my neck and head and right leg. My head is my main complaint. My last day of work was June 19, I started a WC LOA on June 22.

I did try for ketamine in Boston at the Beth Israel, but their program is closed to new patients and their doctors are just awful - mean and stingy, I didn't get even 10 minutes of their time and the consult fee was an amazing $477. They diagnosed me with myfascial pain syndrome.

My RSD doesn't present like many others - I don't have a swollen, discolored extremity, and I don't sweat. I suffer primarily from excrutiating head pain (especially if I use my arms for anything strenuous) and I am freezing cold.

I have also applied to Dr. Phillip Getson in Marlton, NJ, and have an appt with Dr. S in Philly in June of 2010.

I want ketamine because I have tried everything else and I think it is the only way that I am going to get better. I don't want to be sick anymore. Meds only make me able to function somewhat, not nearly at 100% though. And they don't take away all of my pain. My head hurts all the time.

I am hoping that my attorney will arrange to get my bill for the ketamine treatments paid by WC. That is their job. My job is to get all the paperwork in order for the various doctors and to get there. Dr. Getson required that you apply to him and wanted a timeline and all the paperwork to come in at once in a neat package instead of piecemeal from various sources. I applied to him a while ago and he has promised to let me know by the end of this week whether he will see me.

Because I have always worked full time and am considered a high wage earner, it seems like it would make sense for WC to pay for my treatments, rather than to pay me to sit home sick for the rest of my working years. I am only 48. But who knows how they will react. My attorney has been awesome so far, and does have another RSD client that is receiving ketamine in Boston at the moment (he got in before the Beth Israel closed their doors to new patients). I sincerely hope that he can help me get the treatments paid for.

I agree that the thought of paying for the cost of ketamine out of my own pocket would be dicey. I have an awesome husband of 25 years and 2 kids, one is in college. Allocation of such a large chunk of the funds in the household to just ME would be hard for me, I've always been the one to GIVE to others. And once you start ketamine, you can't stop, or you will get sick all over again. We are signing onto a lifetime of significant costs to stay painfree.

My twin sister has RA with Lupus overlap. She has monthly infusions that cost $4-5K. She has been sick for 12 years, but her Blue Cross pays for most of it.

Keep in touch and let me know what you decide to do, Sandy[/QUOTE]

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