[wordgirl]

Today, my new pain doctor highly favored a neurostimulator for my pain management plan. I'm scared of an implantable stim, and I would LOVE to hear feedback from everyone (pros and cons) of your experience with stims. Word Up!!!

Originally Posted by wordgirl

Today, my new pain doctor highly favored a neurostimulator for my pain management plan. I'm scared of an implantable stim, and I would LOVE to hear feedback from everyone (pros and cons) of your experience with stims. Word Up!!!

Hello,

If I was you, I would tell them it's a bit premature. Hugs, Roz

[Jomar]

There are quite a few threads with personal stories in past posts.
If you do a forum search for stim or SCS implant???
you should be able to find them.

here's a few -
http://neurotalk.psychcentral.com/sh...ht=SGS+implant
http://neurotalk.psychcentral.com/sh...ht=SGS+implant
http://neurotalk.psychcentral.com/sh...ht=SGS+implant

hopefully this whole page link will work- a list of stim threads
http://neurotalk.psychcentral.com/se...6&pp=25&page=2

[MominPainRSD]

My Pain doc wanted me to get a SCS too......I've only had symptoms for less than two months. Where is your RSD located?? How long have you had it??? I read somewhere that it DOES work best when it's a new flair and in one limb. I already have symptoms in both feet. I asked the same question about the stimulators a week ago. It's still on the first or second page of the forum. Most of the responses made me NOT want one. I'll be curious what YOU think after you read the posts/links provided by Jo*Mar. Word up!!!

[bassman]

Wordgirl,

There have been many discussions about neurostimulators. Thanks to Jo for helping you find previous threads. I think they will help.

I have a stim, and I don't know if I would do it again. One thing you will probably find in common from all stim users is - don't rush into it. Mine was implanted almost 14 years after the onset of symptoms. It is considered, by many, to be one of those "last resort" treatments. It is difficult to reverse if you don't like it or it does not work. Even with the most sucessful implant, has its own set of typical side effects. It is not sucessful in everyone. Approach carefully.

Good luck.

Mike

[dealingwithtos]

Hi Wordgirl,

I had an implant of the SCS on November 17, 08. My RSD is in my arms at this point. So, they were able to stimulate both arms.

The stimulator has been wonderful as far as the affects and how it's helped my arm. It has taken all of the sensitivity away. I can wear long-sleeved shirts for the first time in 1.5 years. The ceiling fan doesn't hurt.

But, I have to say, the recovery is long. Like, very long. Because my RSD is in my arms, they needed to thread the lead (from the base of my skull) down the length of my back (starting from about 6 inches down from my skull where the lead comes out of my spine), underneath the skin to the battery. So, all of that skin is disrupted. It's taken until now where my back is better. But, I do have burning patches in my back. I don't know if it's spread or not, or if I'm still healing. I have a desk job so I have to have a pillow on my chair because I can't put my back against the chair yet.

You really need to think of the pros and cons for you - just you. Have you had the trial yet? That's required before you have the permanent implant. That'll give you some idea of what it'll be like. Also, have you exhausted all other options?

Good luck to you. It's not an easy decision.

[wordgirl]

I tried to find a way to search, but I couldn't find it -- I'm sorry to have bugged anyone!! Thanks for the links -- I'll check them out. I haven't tried the trial yet -- it was just suggested yesterday and I have some serious thinking to do. I guess I do some more reading before posting. Thanks!

[MominPainRSD]

Originally Posted by wordgirl

I tried to find a way to search, but I couldn't find it -- I'm sorry to have bugged anyone!! Thanks for the links -- I'll check them out. I haven't tried the trial yet -- it was just suggested yesterday and I have some serious thinking to do. I guess I do some more reading before posting. Thanks!

Oh......honey.......NO ONE feels like you bugged them!!! We welcome all questions and are happy to answer. Everyone was new here at some point and the forum can be kind of hard to maneuver around if you're not used to it. Plus, information changes (as do members and opinions) so it's always good to get information "hot off the presses"!!

I hope you found the links that were provided useful and that you are able to make an informed decision on what is best in your case. I am debating the same issues and don't feel like it is worth the risk in my particular situation. Please keep us posted on your thought processes and let us know what you choose to do.

Take care and best wishes!!!

[dennyfan]

I have had my SCS since May of last year. While I would proabaly do it again it has caused alot of problems. My RSD has spread. I had to have a third surgery to repair the leads because my dog jerked me so hard he tore the leads out of the generator. By the way no one had ever seen that before. It really helps me but it did not give me the pain relief I so deperately wanted & had heard about. The only good thing about an SCS is there is a trial surgery so you can try it for your self before its permanetly implanted. You cant decide this by others opinions or results. That is why the trial is so important. Because if it doesnt work well for you your not stuck with it.
Hope you get the answers you are looking for
Denny

[msdrea83]

at first my rsd was just fingers to elbow on left arm... after about a year of being dx i did the trial stim, which pretty much masked all my pain, so i went ahead with the perm stim. at this point i was 21. once i had it perm implanted i never got the pain coverage like i did with the trial, and it spread up to my neck area. no matter how medtronics tweaked the settings nothing helped. my pain was worse than before, not to mention in my whole arm vs the lower half... my doc refused to put me back on pain meds and told me to get over it and go back to work.... i eventually moved back to cali and found a new pm team. and i had it removed about 18months after having it implanted. not just because it didn't help but with a battery in the back of my hip and the lead up my back to the base of my neck my back also began hurting, not to mention it'd shock the hell out me sporadically. from the research i've done (for a research paper for school) i found that its about a 50/50 shot at getting positive results. like all treatments for rsd it just depends on the individual person and how they react to it... if i had been older, 40-50, i def would have tried a pain pump before a scs. even after having the scs i would have gone for the pain pump. my doc refused to have that as an option for me since i'm still in my 20's. just make sure ur ready for the possibilty that it may not help and the possibility that it can make the rsd spread.