Hi Frogga...I'm the one who has sent you a PM in the past regarding the DBS. My son, Jeffrey had the DBS done 2 1/2 years ago, 1 month after my mother past away. The hardest thing for me to go through but it was his decision. Jeffrey was 18 at the time and had been living with generalized dystonia for 8 years of his life. Jeffrey was 10 when one morning he woke up to the monster of dystonia, he couldn't walk.

With generalized dystonia your whole body is involved, you have spasms, your limbs are twisted and now it is funny but back then putting shoes on his feet was the hardest part, what a work out! Jeffrey had botox injected into his legs and feet every 3 months, the alotted amount, 4 vials. I couldn't stand to watch them inject the botox into the arch of his feet, but Jeffrey was a trooper, no freezing agent what so ever, just the injection. We were lucky that Jeffrey was not taking 100 percent by the dystiona meaning total care, he could have been.

Jeffrey is considered a DYT1 genetic generlized dystionia.

We knew about the DBS for about 5-7 years before Jeffrey made the decision to have the surgery. DBS has been very successful for people with Parkinsons Disease and now is being used for people with other type of movement disorders. DBS is not new for people with Dystionia. DBS has been used in Dystionia now for about 5-7 years or more with great success.

Like I have said Jeffrey has had his DBS now for about 2 1/2 years and his life is like a whole new life for him. I never knew just how tall my son was until he had this surgery performed and it was finally turned on! When he finally was able to stand up I was able to see just how tall he is!! Jeffrey no longer needs crutches or a wheelchair, I get to use his wheelchair for my RSD. He no longer has to use hand controls on his car to drive. His medication is almost gone he still has to take a baby dose of tregretol and botox 4 vials every 5 months. Prior to his surgery Jeffrey's medication was 1600mg. tregretol, 1600mg. baclofen, 36mg. zanaflex and botox 4 vials ever 3 months. His liver enzymes were always high! which was very scary for a child. By the time he was an adult at that rate he would need a liver transplant.

Jeffrey has an appointment March 22 to check on the status of his batteries, which are just now getting low. So, he has had only one set of batteries since his original surgery. Jeffrey has had only two adjustments on his DBS since his surgery which is also good. You have to remember Jeffrey is a Full Body Dystonia, not just a limb, a Full Body!! So, I guess I'm a little confused over the battery issue you described.

Frogga if you were to ask my son about DBS, well, I think you probably alread know what his response would be. While going through Jr. High and High school was not easy for him, this surgery brought him a whole new life. People don't even know he has Generalized Dystonia, he doesn't even tell employers about it.

I read you have concerns about the healing process. Having RSD I too would have concerns. I would think your neurosurgeon would have some way to help you with your concerns regarding that. Before you decided on the surgery couldn't you have your treating doctor for your RSD talk with your Nurosurgeon regarding the RSD and healing factor?

Also, Frogga, here in the States there is a wonder place for people with Dystonia to go to for help. They have a website with wonderful information that you can access. The website is www.dystonia-foundation.org, maybe there is some information on there website that maybe helpful to you.

For anyone else please feel free to go to the website and look around. PBS just did a wonderful show on Dystionia called "Twisted", if you see it on any other channel, please watch it. Dystionia is a monster! Me, I would rather have RSD anytime.

DBS is a life saver for some people, maybe it is not for you Frogga but before you decide, investigate and ask a whole lot of questions. The best of luck to you!!! If you want to ask question feel free, Jeffrey will also be more then happy to answer questions. Hugs, Jewells