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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=pattihabs;3271747]hi amber:) i was at my pm last week and i am waiting on my physo exam for the scs trial and if all goes well the scs. anyway, he and i were talking about the ketamine shots. i live in ct. and according to him, the only place i can go and do it is in arkansas and it is not fda approved and w/c wont pay for it and it is extremely expensive(he did not say how much). he also said i would be in icu for 5 days. that was it. i know nothing else about the procedure. i am clueless about it but someone here can't remember who said it was fda approved. well please tell me about your experience with the scs. i am very nervous with the thought of something being implanted into my stomach and am afraid to have surgury due to makeing rsd spread. any info would help. if you know more about the ketamine, can you also tell me. thank you and i hope you feel better. have a great day, patti:D[/QUOTE]

Patti,
First of all please dont decide to not go through the scs just because of what i am saying. So many people get it put in and love it. Theres people on here that have had it in for years and love every minute of it. But i got my trial in august of last year, absolutely loved it. For the first time in over seven years i was able to tell my mom it doesnt hurt. So following that success i decided to get the permanent one it.

So in October i got my first one. Since the beginning the stimulator never worked as well as the trial. I could never get it to the right spot in my wrist where the pain is. I started having problems with it in december of last year so went it and got x rays. Ended up my leads had fallen almost three inches down my spine. During that time i also started getting really bad back pain. So we decided to revise the stimulator to try it for a second time.

So i got it revised, worked okay for a little while. Then i started to have terrible back pain again and started having problems with stimulation getting to the right spot again. Had xrays done and everything looked fine. Had it reprogrammed several times, but the last time i went i there was a problem. He said he tried every possible lead combination he could and i could never feel anything on my left side (where the rsd is). So i had two choices. I could revise it again with a new surgeon or i could get it taken out.

I think the major decision in getting it taken out was all the back pain i get from it. My battery is under my belt line in my back and it kills me walking. I cannot stand up or walk for to long with out it hurting. The place where the leads loop over itself feels like a nail sticking out of my back. To me the little bit of relief i got from the scs in my wrist doesnt near compensate for all the back pain i have from it. But like i said i have a friend here that just got hers and is completely happy with it. I had a bad experience with it but you probably wont.

As for the ketamine, this is how i heard it explained. When you break your arm if you you dont put it a cast it wont heal quickly or correctly. but if you put it in a cast it will heal. ketamine pretty much does the samr thing to your nerves. it allows the nerves to almost heal themselves, so once the ketamine is done it should take the pain away or at least reduce it. I didnt think that any form of it was fda approved yet but from what ive read they go between 10 to 15 thousand dollars. Which is a lot. but like i said i would rather be paying it off the rest of my life than not being able to have a life.

Well i hope this has helped somewhat. But please like i said dont let this scare you out of getting one, most people are just fine with them. please let me know if there is anything i can do to help you and let me know how everything goes!
Amber

BY THE WAY THERE IS A DOCTOR IN PENNSYLVANIA, DR. SCHWARTMAN OR SOMETHING LIKE THAT THAT DOES THE KETAMINE TOO. I THINK IT IS JAXOBEAN THE SEES HIM. THAT IS THE ONE I WOULD END UP GOING TO SINCE I LIVE IN DAYTON OHIO.





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