:You-Rock::Heart::Head-Spin::Heart:too. THANK YOU SO MUCH!! WE ALL APPRECIATE YOU AND I KNOW I JUST LOVE THE STUFFIN" OUTTA YA, Amber!!
Thank you so much for th great Pm girl!! Ya-Hooooooooooo!:hug::hug:~Love, Desi

[QUOTE=nopainever;214871]Hi Sweetie...

It's Heather here...Not sure if you remember my experience with the SCS Trial or not, but I feel that I need to tell you since you asked for anyone's input, but I don't want to scare you.

I had RSD bilateral in my Rt and Lft feet and legs and after arguing with my doctor for a year I finally agreed to the SCS Trial...I always had a bad feeling about the darn thing...I got sick of him suggesting it, so I went ahead and went for it in Dec 06. For 10 days that thing was in me and it drove me nuts the 1st days. I couldn't stand the feeling...It made ME feel worse. The tingling added to my burning sensation and my legs swelled...Plus by the 4th day the leads (wires) had moved somehow in my spine and were hitting different parts of my body and the SCS was going CRAZY inside me...I had it off for the last 5 days of the Trial...

So, day 10 the Tech removed the leads and I went home...Within 2-4 weeks the RSD was traveling up my body: Up my legs, my stomach and back, and then to my arms and hands, until it finished at my face and neck...I thought I was going crazy and so did everyone else...Now I have full-body, systemic RSD...

I love ya and care about you so that's why I am sharing this with you...A lot of people love the SCS and have great results...I wasn't so lucky!

I wish you the best Desi!

:hug:Oh my, Gosh you poor sweet thing, you, Heather!! My Gawd!! Who in all blazes put yours in?? I want honest, opinions and you gave me yours!! Even before I read this, reply from ya, Heather, I was like.... hmmmm.. turn it off to drive? what, then I would have to drive in pain? needles(where the leads go, into your spine??) I am NOT sure.. I WILL NOT LET ANY ONE KEEP ASKING ME TO PUT THIS JUNK INTO MY BODY< AS IT'S MY BODY, I"LL BE ASKING THE QUESTION's!;) WOW!! This was an awful, awful thing to happen to you!! I would have taken that dude, lady to the bank!! LOL Well, thanks again.. this is what I want.. honest whole value opinions. I thank Mary, Tayla, Amber, And now, you too.. by having those spinal cord stimulators implanted.. your giving me things to go at!! Also, all the advice on here is wonderful!! So, Heather, your stating now, that you have full body RSD over this from the SCS??:confused: Oh my, go get your money dear, you deserve it!! I am so sorry, Heather!! awaiting your reply, ~Love ya,Desi:hug::hug: P.S. Please , tell me that your doing much better, or your so much worse off, Heathe??:( Oh, also where did you get yours done? were you in the hospital for all this?:confused::eek::hug::hug: )I really am interested in hearing some more stuff, links, more friends out there have this SCS put in and so on?? Thanks!!hug::hug::hug::grouphugQUOTE] Now, please.. do not think that anyone here is offending me here, I go up this month to Cleveland hospital to talk to a good doc that is suppossed to be good.. so do NOT be afraid of scaring the BEE-Jeebers outta me, Ok?? ok.. done.. gonna rest, think, pray, laugh? cry? LOL Love to all again, ~Love, Ok.. this letter I am posting keeps telling me to lenthen it to at least 10 characters?? :confused: what is up with this? this is why I made all thos faces down at the bottom.. plus some.. ok.. lets see if this will go through now?? LOL:D
LOL Now, they want me to take off 4 faces(expression faces??) LMAO over here!! ~Love, Desi :0)

Hi Desi,
I am sorry for your pain. You asked for honest opinions of the SCS so here goes. I had my SCS done in 2003. It wasn't done in the office. It is surgery and it should be done in an OR not a Drs office. It was ok for awile, it did feel strange, the tingiling up and down my legs. I was able to go off all my pain meds. But that didn't last long. The pain returned and not only did I have to go back on my meds. (oxycodone) the meds didn't work as well. They added methadone. I was all drugged up. Then I fell on some ice and one of the leads slipped out and was sitting on a nerve. The pain from the lead was worse than the RSD. I put up with it for a couple of years but it took my breath away. This past December I had it taken out. (it had been shut off for 2 yrs) Its the best thing I ever had done. Make sure you get alot of opinions from other Docs. before you have it done. I hope I didn't scare you.

Love Sue K.

:) You are sort of right Desi, I have an intrathecal pump implanted!
Love always
Tayla:hug:

Hey Desi...
 

I was living in Las Vegas, NV at the time at was being seen my Dr. David Lanzkowsky at Centennial Spine & Pain Center. I just moved back to Orange County, CA 2 weeks ago, because he would not treat me anymore. He said I was the worst case of RSD that he'd ever seen and didn't know what else to do for me...

It was a good idea, because I went back to my Dr. that diagnosed me in CA and he is so happy to have me back. Las Vegas is like a transient society when it comes to medicine...VERY SCARY!:(

I am doing okay...I do have full-body, systemic RSD that developed right after the SCS trial. Though, there is no way to prove this, it would never hold up in court.

I just had a bilateral LSB, which I have once a week (every Fri) and I have a SGB every Tues...So, between these two procedures every week and meds, I am doing as best as I can...All my pics are on the Photos Thread...Check them out, they are pretty recent.

I just wanted to let you know about my experience...with all my love and care,
Heather





[quote=Desi;217013]