_Spinal Cord Stimulator, Long Term Follow Up

[Robyn122]

Hi everyone,

I've been deciding about getting a spinal cord stimulator to treat RSD, and in my research I found this long term study they did which talks about how spinal cord stimulators give out after about three years for RSD. Have any of you experienced this?

http://www.rsdhope.org/Showpage.asp?PAGE_ID=139&PGCT_ID=3888

http://sci****tgers.edu/forum/showthread.php?t=63765

Please let me know what you think about stimulators -- I know some of you have had good luck with them. But I don't want to go through all that if it's only going to give a few years of "some" relief...

-RO

[mrshippie]

HI, I, too , am considering a neurostimulator for my RSD. However, I have heard alot about how the scar tissue which forms around the implanted leads can eventually cause more problems. Has anyone experienced this? I am new to this community and have only recently been diagnosed with RSD of the ankle. Any help will be appreciated!

[Rob123]

Hi, MrsHippie how did you get RSD in your Ankle? and Roblyn how did you get RSD? If it was me I would not get a Stimulator it could cause your RSD to travel thru your body.Here's a website- Dr.Hooshmand just typed in his name and his website will come up and then go on his PUZZLES-1-146 and about Stimulators and other things about RSD. Hope it helps you!!!!

Take Care,
Rob

[coleen h]

All I can do is tell you the story of my SCS and hope you can glean some valuable info from it.

One of the most disappointing experiences of my life was the failure of my SCS. I was so hopeful. The trial was great. It knocked down my pain about 40-50 percent. I went ahead with the implantation of the permanent unit. As soon as we turned it on I knew immediately there was a big problem. The coverage went only halfway down my arm. It didn't even reach the elbow where my nerve damge is.

I went on the surgery table three different times while my doctor tried to adjust and placed the leads correctly. He said the leads "kept rolling on him." He finally gave up. I was pretty well done with the SCS until he recommended having paddle electrode emplaced by a neurosurgeon. I went ahead and agreed. The surgery was horrible, the worst of my life. He did a laminectomy and put in two paddle electrodes. They worked OK, not great, for about three - four months, then relief got less and less. Medtonics tried many times to configure the unit so that the coverage would be better, to no avail.

The unit was removed when they implanted my pump in 2003. My pump is still working well. I have been doing well lately and only taking 1-3 dilaudid breakthough tabs per day.

love and hope,
Coleen

[mrshippie]

HI Rob and others....

Thanks for the input and advice!

My RSD began with a fall and bad sprain of my ankle and knee at work. I was sent to an urgent care type dr. and felt that I did not receive the best of care, FINALLY, after 3 months, I was sent to an orthopedist who treid cortisone, PT, and other pain meds to help with the pain. I did have some hypersensitivity during PT and it began to increase gradually. OF course, PT, etc. did not help and I had surgery on the ankle after 6 mos. IT was after the surgery that I noticed a big increase in hypersensitivity, lack of range in ankle and continued pain. Finally 9 mos. after my injury, I was diagnosed with RSD (that was Dec. of last year). My RSD spreads up from the ankle and occasionally up to the hip depending on the environmental conditions, etc.

So, I am searching for alternative treatments and for a good RSD specialist in NC. If you or anyone else knows of one, please pass on the info! THank you...IN JOY...mrshippie

[j*sunset]

There is a lady at this site that has had a SCS for a month or 2 now and she has has TOS with RSD.

her profile link so you can read about her posts & experiences with it.
*******************************.com/member.php?u=403