Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-13-2009, 02:52 PM #2
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keep smilin keep smilin is offline
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Join Date: Aug 2009
Posts: 851
10 yr Member
Angry My SCS experience..

Quote:
Originally Posted by CZZ74 View Post
Hi,
My motivation for looking back into these options is the isolation of not being able to drive and the ensuing depression that accompaines the isolation. I live about 50 miles from my family, doesnt sound far but I only see one family member on a regular basis, my husband travels about 90% of the time.I am by all definitions , a shut in.

In any event. my body rejected the port a cath dr. S put in for my infusions.This was in year two. I had ketamine insusion for almost 4 yesrs. I dont know how many of us have been told our RSD is extremely opportunistic, but i have been.

The rejection of the port was a serious one and almost immediate. severe alloydina, edema, infection etc.

It had to be removed within a month on an emergency basis up at hahnemann hospital.
30,000 dollars to put in , 30k to take out. wow is right.

Following that,( I have cold rsd) I had picc lines put in and taken out constantly as it is near impossible to get an IV line in me. Again they had to keep coming out due to the RSD and severe alloydina and further complications.

Now I'm in my 6th year, I'm having alot of GI problems upper and lower, so I am looking at options again.

I've read alot about SCS on neurotalk, and its success. But not much about pain pumps. I have been told over and over I am not a canidate to scs for the above reasons as well as because i am full body.

Im wondering if anyone has the pain pump. I dont know how I would make it through hte surgery but with the help of my pain mangagement doctor it might be possible.

Could anyone share their experiences with a pain pump. what type you have etc.

Also, if you have scs, why did you select that over the pain pump or vs versa. thank you so much,

I appreciate any input anyone could share, cz sorry this is so long! I really do try to edit my posts and make them shorter!!!
My Dr. felt the SCS was the best route for me and really didn't suggest the pain pump, and I was not familar with the pain pump.. I had the trial SCS placed in for a 5 day trial in 4/08...it was a success as I realized it was helpful after it was removed..my implant surgery was put off and put off so many times due to the fact my Dr. felt I needed the smaller unit due to my size, which was not manufactured yet..So in 9/08.. The smaller SCS became available and was put in...sadly..it did not work for me..it actually makes my RSD mad and I can not wait to turn it off!!!!!I elect to keep it in as it was wired for both of my legs... my RSD had spread to both of my limbs by the time it was placed in so I will keep it to hopefully help with my good side as it worsens.. Take heed with the SCS.. it is a big step.. I don't really regret it due to future usage but the Dr.'s and unit managers putting it off basically cost me the chance to walk again...
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