I have RSD in my right leg...It began after an injury sustained at work and a surgery that followed. It took approximately a year to be diagnosed with RSD and then close to 9 months to get treatment for it. After many blocks and a load of medications I finally decided to go with the spinal stimulator.

I had the stimulator put in last summer (2000). At first, it was a Godsend! Talk about relief!! For the first month, I was able to wean off most of my meds...was just down to Neurontin. By month two, physical therapy was going well and I thought this was going to be "the cure". At the end of the second month, my doctor made some adjustments on my stimulator and things just went downhill from there. I started getting severe backpain and the leg pain was back full force and then some. The stimulator just wasn't cutting it anymore. Since I had had an "old" electrode, they decided it would be best to do a revision. It just didn't work....it's been "revised" twice since. I have the most incredible back pain as a result and am looking forward to having it come out. I've been really disappointed because it worked so well at first.

I'm not writing this to scare anyone off of getting the stimulator. In fact, I'm still an avid proponent of it. It's possible that if the adjustments had not been made, the stimulator would have continued working as well as those first two months...but it's also possible that it was simply "rejected" by my body.

I will say this to anyone thinking of having a spinal stimulator put in: Give it a LOT of thought...the stimulator DEFINITELY has its advantages and if it works according to plan, it can be the difference between disability and living a functional life. Be very careful and aware of what your doctor is doing as far as adjustments...ask EVERYTHING and be armed with knowledge. Get opinions from other people that have had them...did it work? Did it offer relief? If so, how much relief? Would you do it again? Have you had any complications or side effects?

However, even after the complications, I would do it again, if only for those two months of relief. That alone can make it worth it.

Hi-I'm a fellow RSDer. Haven't gone that route yet..but, take a look at RSD links and you may really find some helpful friends in the same boat....Good luck http://www.healthboards.com/ubb/smile.gif


[This message has been edited by moderator3 (edited 09-14-2001).]

Hi. I've had a spinal cord stimulator since 1995. My battery(unit)was replaced last year but I was promised the leads were in tact and functioning like brand new. Well, now over a year later, I only got about about 2 months relief with the new battery because my leads drained the new battery in a matter of 4 months. After I got an attorney, the maker of my stimulator has agreed to do a revision which I'm scheduled for Oct 26th. Was the revision any different from the 1st initial installation? I'm really nervous about it, but for the first 4 and 1/2 years I really did get relief. That's the one part I'm looking forward too. However, my back has always been sensitive since the initial installation. Any comments on your revision would be appreciated. Also, how long were you hospitalized for the revision? I'm hoping to come home immediately but the dr says it depends on my reaction.(Sorry this is soooo long).Thanks

Buffyt,

Hi there! I'm sorry to hear about the problems you've had with your battery life...I truly hope the revision helps!

The first revision I had went extremely well. I was in the hospital for about 2 days (my doctors decision to watch for infection...I wanted to go home) and felt pretty good initially. The second revision, however, had me in for about 5 days with a longer recovery time at home. For each revision they had me on a morphine drip which undoubtedly made it all as painless as possible. Overall, my experience has been that my fear of the surgery far exceeds the actual pain involved.

It's understandable to be nervous about the revision and I can totally relate. In my experience, it hasn't been even remotely as painful as I feared it would. Don't push yourself and just allow your body the time it needs to heal. If you feel you aren't ready to go home from the hospital right away, discuss this with your doctor, but you also may be looking forward to going home right away too. The best thing is to just see how you feel and if you can tolerate going home on pain meds or if you need to stay in with something stronger.

Good luck with the revision!! Try not to get too worked up over the surgery...(easier said than done, I know) but I'm sure you'll be glad you did it and the benefits will be well worth it.

Take care and I hope to hear from you. Let me know how it goes and feel free to email me if you have anything you'd like to talk about. Ivony2000@aol.com

Good luck!!

Hi.

Thanks for the encouraging words!!! I was hoping that for this 2nd revision, I wouldn't have to stay in the hospital!!! How come you had to stay for 5 days?? I know the first time, it was only 1 day but I was really hoping that because I have been through it, that I'd be able to go home right after.

I have rsd and they want me to consider a spinal stimulator ans it is total out of the question for the reason you said my back! I went in and a spinal epideral for one week , mean while I was hooked up to a cpm to help with range of motion needless to say I hated it the hwole thing and I have lost 15 ponuds in the last month and feel very sick.

I have one and had the opposite thing happened :confused: . Man I was totally disappointed. I had read on different web sites were this person or that got their life back. Well the surgery was alot more extensive than I was told about to begin with and that really made me mad :nono: . I still have pain, but there are still days that the little thing actually works :) . It's not dependable or reliable and I have learned that it does best if I cut it off every little bit and give it a rest for a day or 2. My RSD in Left foot x4 years now. and now SMP with R arm involvement as well. I also had a herniated L4-L5 and L5-S1 and it's really helped that. But If i can get 1 day of relief, it's worth it. Then there are days I know it's time to cut it off, cause it makes the pain worse?
I know there is no rhymn or reason here, but you know this whole mary-go-round has never had rhymn or reason!!!!!!!!
It's nice to meet you, and I am, In kindest regards,
deefer
I have RSD in my right leg...It began after an injury sustained at work and a surgery that followed. It took approximately a year to be diagnosed with RSD and then close to 9 months to get treatment for it. After many blocks and a load of medications I finally decided to go with the spinal stimulator.

I had the stimulator put in last summer (2000). At first, it was a Godsend! Talk about relief!! For the first month, I was able to wean off most of my meds...was just down to Neurontin. By month two, physical therapy was going well and I thought this was going to be "the cure". At the end of the second month, my doctor made some adjustments on my stimulator and things just went downhill from there. I started getting severe backpain and the leg pain was back full force and then some. The stimulator just wasn't cutting it anymore. Since I had had an "old" electrode, they decided it would be best to do a revision. It just didn't work....it's been "revised" twice since. I have the most incredible back pain as a result and am looking forward to having it come out. I've been really disappointed because it worked so well at first.

I'm not writing this to scare anyone off of getting the stimulator. In fact, I'm still an avid proponent of it. It's possible that if the adjustments had not been made, the stimulator would have continued working as well as those first two months...but it's also possible that it was simply "rejected" by my body.

I will say this to anyone thinking of having a spinal stimulator put in: Give it a LOT of thought...the stimulator DEFINITELY has its advantages and if it works according to plan, it can be the difference between disability and living a functional life. Be very careful and aware of what your doctor is doing as far as adjustments...ask EVERYTHING and be armed with knowledge. Get opinions from other people that have had them...did it work? Did it offer relief? If so, how much relief? Would you do it again? Have you had any complications or side effects?

However, even after the complications, I would do it again, if only for those two months of relief. That alone can make it worth it.