I've had PN for over a year now. Done all the testing and we can not find the cause. Tried the medications and for one reason or another they weren't good for me. Topamax did help a little bit and I liked it but after about 6 months my hair started to fall out so we had to dc it.

I finally got in to see a pain specialist yesterday who wants to try me on a Medtronic Neurostimulator. I've done some research on it and can't seem to find people using it for PN. Has anyone here heard of it being used for that? Has anyone tried it?

Thanks, Koko

I've heard of it being used for PN, but don't know of any results from anyone. I haven't heard of any kind of success/failure statistic for that either. If you don't hear of something here, keep checking on the web. You may want to consider trying to check on some hospital websites like Mayo or Johns Hopkins. Best of luck to all of us.

Hi ~ I had the neuro stimulator by MedTronic for 6 months due to PN in my leg. I had the trial, and I THOUGHT it was working, but they gave me so many restrictions during the trial period that I didn't get a good assessment of pain relief. They implanted it, and after the initial healing period I went back to doing my normal routine stuff ~ and WOW the pain was awful again. I kept adjusting the hand-held thingy, but it didn't help. I had the SCS reprogrammed several times, but nothing worked. It seemed like the stimulator just irritated the nerves even more.

Then I ran into another problem ~ the stupid "generator" that they implant started to work itself out of me!!! It turns out that I don't have enough fat content in me to hold the darn thing IN. So they had to remove everything, and that HURTS cause of scar tissue. After 10 years, I still have a very sensitive spot in the mid-back where the leads were placed, due to scar tissue.

All you can do it try it ~ you get a trial period so you can see if it works. Just make sure during the trial that you give it a good TRY - go about your normal routine within reason. I wish you the best of luck and hope it works for you! God bless. Hugs, Lee

Hi. I have PN and RSD and was suggested a scs but then it was put on hold due to other procedures causing more pain. Have you had any other procedures before this? May I ask what state you live in? I have a friend who has PN and she has 2 scs one for legs and one for the arms. If you want to PM me I can ask her to email you about how she is doing.

Here is the link to the SCS/Pain Pump Forum here at NT
(it is listed as a sub-forum under the "Medications/Treatments" forurm)

http://neurotalk.psychcentral.com/fo...ysprune=&f=118

It is very active and full of information and people's experiences.
The 'stickies' at the top contain FAQ's and some very impressive links to sites that explain these units very well.

I've had mine for 9 months and it takes away about 75% of the horrible burning neuropathy in both legs

Caring
Rae

A friend of my father had it for PN in hist legs. I talked to him and he was feeling great as it worked well. I was looking into it but it doesn't work for non-length dependent neuropathy.

I went to physical therapy for some time and my doctor -- a physical medicine specialist -- finally ordered a Neuro-Muscular Electrical Stimulation (NMES) unit for home use. It works to re-educate the muscles and make new connections between brain and body parts. If it's not possible to make new connections due to extensive lesions, then it keeps your muscles toned. It does help with pain as well.

I have recently had a reversal of long-standing numbness in my feet and connect that to taking Olive Leaf Extract. At first, it sounded silly to me but some of the information on this supplement is amazing. I would guess your response would depend on the level of your disease activity and progression.

Olive Leaf Extract has improved MS-like symptoms (EAE) in mice according to an article entitled: "Dry olive leaf extract ameliorates experimental autoimmune encephalomyelitis" I was unable to post the link since I haven't been on the forums long enough.

Another great article describing the many benefits of OLE is on Wikipedia.

Thank you, good idea, I didn't think to check the Mayo or Johns Hopkins websites to find info on it.

Ohh, the thing about not having enough fat content rings some alarm bells for me. I am pretty small. Thanks for letting me know about your experience, I appreciate all the info I can get right now.

I'm sorry you have been through a hard time with it all.

I live in Kansas. I'll shoot you a PM with my email, I'd love to hear how your friend is doing. I'm new to this posting style so it may take me a few to figure it out.
Thank you. I'm sorry things are on hold for you right now.