[lostmary]

Hi all,

Just wondering about the pain pump. Now that the scs has been out a couple of months, I've notice that the rsd pain is coming back full force, and it has spread to where I had both of the scs put in. I'm really upping my percs, and I've put myself back on the muscle relaxer. I know I don't want to have the scs put back in. the pain is now deep down in my bones and my muscles along with the burning and skin tenderness. I just don't know which way to go. It's time to start researching this option. any one out there with experience with this, good or bad, please let me know. All of you know my past experiences with the scs, and that I really need the honest opnions, so please let me have both

Hugs
Mary

[msdrea83]

I had my scs removed after having it in for like a year, my RSD spread too after it was implanted. my friend's mom had the pain pump implanted, her rsd was in her foot/leg... and she absolutely loves it. she is a lot more active and can walk w/o having to take breaks anymore... i definately wanted to have one implanted after i had my scs removed... but my docs said no cause i'm in my mid 20's... so i started researching like crazy about ketamine, and the ketamine infusions.... which i would reccommend to anyone.

Originally Posted by lostmary

Hi all,

Just wondering about the pain pump. Now that the scs has been out a couple of months, I've notice that the rsd pain is coming back full force, and it has spread to where I had both of the scs put in. I'm really upping my percs, and I've put myself back on the muscle relaxer. I know I don't want to have the scs put back in. the pain is now deep down in my bones and my muscles along with the burning and skin tenderness. I just don't know which way to go. It's time to start researching this option. any one out there with experience with this, good or bad, please let me know. All of you know my past experiences with the scs, and that I really need the honest opnions, so please let me have both

Hugs
Mary

[flyaway]

Originally Posted by msdrea83

I had my scs removed after having it in for like a year, my RSD spread too after it was implanted. my friend's mom had the pain pump implanted, her rsd was in her foot/leg... and she absolutely loves it. she is a lot more active and can walk w/o having to take breaks anymore... i definately wanted to have one implanted after i had my scs removed... but my docs said no cause i'm in my mid 20's... so i started researching like crazy about ketamine, and the ketamine infusions.... which i would reccommend to anyone.

lostmary, just wandering why you had the scs removed--i just had one put in--i do not have to worry about spreading as i already have full body rsd--just curios

cheers!!!!!!!!!!

fireball!!!!!!!!!!

[msdrea83]

the trial worked perfect for me, i was only affected from fingers to like right above my elbow in my left arm. once i had the stim put it i spread up my arm to like my neck/shoulder area- one of my scars is right between my shoulder blades...so coincidence.. i think not. and then i wasn't getting nearly 50% of the coverage i did with the trial. i saw the medtronics rep several times to reprogram it... and still nada. my doc at the time told me to get over it and refused to put me back on any pain meds- he had taken me off all of them after i was all healed from surgery and told me to just get a job and move on with life. my pain levels had increased so much more by that point... i ended up moving back to cali- i was in ks- and got a new pm team.... back on pain meds and since the stim wasn't helping and made my back and hip hurt... plus the annoying shocks, i finally decided to have it taken out. at first i was just too scared the surgery to remove it would cause another spread... but i finally just sucked it up and decided to have it taken out. it def got rid of my back and hip pain.

Originally Posted by flyaway

lostmary, just wandering why you had the scs removed--i just had one put in--i do not have to worry about spreading as i already have full body rsd--just curios

cheers!!!!!!!!!!

fireball!!!!!!!!!!

[lostmary]

I had my first one put in back in Nov. 07. Things were fine. Didn't get as much relief as the trial, but even the relief I got was good. I really loved it. After a while it didn't seem to work as well. I thought I was just getting used to it. then it seemed that where I had the battery implanted ( in my upper butt), was always hurting and burning. My dr. finally agreed to move it, then decided that to move it to my belly, that he wanted another dr. to do it. I found another dr. in my area to do it. Went to him and he did X-rays and it showed that the leads were not any where near where they were suppose to be, so he said he would put a complete new unit in, one with paddles, etc. Had it done, ended up with about 80 staples. the dr. had to open up old site to remove 1st unit (he couldn't just pull wires thru due to extensive scaring), then open more for new unit. After 2 wks removed all staples. I was complaining of pain in the new battery site of pain. everyone said it was fine. A week later I was still complaining of pain, and then I got what I thought was the flu. very sick, etc. woke up one night covered it pus. I developed merser, had emergency surgery, ended up in a nursing home (it may not have been hell, but it was in the same zip code ). Had PICC line, home nursing heath care when I finally got home, all this went on for a couple more months. I realize that getting merser had nothing to do with the scs. That was just the hospital, but it didn't add to making me feel better. Now I have RSD in both legs (had that before scs), in my butt, and my back. My back in now so painful and weak that I can barely stand. I'm hoping that the pain pump will help.

Hugs
Mary

[angelrsd]

mary i have had my pump for 5yrs now and have fentnly in it and it has had its up and downs like everything with rsd. it does alow me to function more than i did with out it. i think that helps control the pain alot better than scs or just regular meds. just make sure that have a doc that knows alot bout them and how to handle any problems .the one think the intinal surgery is very painfull it took awhile to get over it but i still would consider it. it has helped me alot i have full body rsd organ involment 11 yrs now


-carrie