Frogga I hope you remember me...I wrote to you several times about the DBS. My son has generalized dystonia= full body dystonia since he was 10 years old, now 22. He, Jeffrey had his DBS implanted well it will be 3 years this Dec. 20th. Jeffrey still takes minimal medication and continues with botox for his legs only. The botox has gone from every 3 months to every 5 months. Jeffrey is doing great with the DBS!!! He no longer needs assistance with walking, upper body spasms are gone and he is standing TALL!!!

I remember you wrote about your Doc questioning the DBS with your case but it would not hurt to get that second opinion from your friends doctor at all. Heck I would be going for not only a second but a third opinion if you can.

I understand how hard it must be going to school. I watched my son struggle through school and his case is not quite as bad as yours...he doesn't have RSD or the spasms you explain but he struggled.

It was very hard for me as a parent to see my son wake up one morning and not be able to walk. Jeffrey and I fought this monster called dystonia, sought out several doctors, different hospitals and treatments. Then came the news of the DBS. We followed the cases of the DBS with the dystonia patients and finally after 7 years Jeffrey decided to take the chance on it. Yes I was scared that December morning when he went in for the surgery but the DBS is amazing! The other factor that helped Jeffrey in deciding if he should try the DBS or not was the fact that his liver enzymes since he was 10 years old have been on the dangerous high level. His Doctor informed us by the time Jeffrey got to be in his late 20's early 30's he might have to be on a liver transplant list because of all the medications he required to keep his spasms at a tolerated level.

I hope when you go to see your friends Doctor you get some good news! Yep it is kinda scary to think about someone going into your brain with wires but the end results if it works is awesome!!!

Good luck with you decision Frogga and if you need any other info or have any other questions I'm sure my son would be more then happy to answer them. Hugs, Jewells

oh by the way here is a link for you to go to www.dystonia-foundation.org they have info on the DBS and also can answer questions for you if you write to them.