Hi Frogga...yes I'm the one who you wrote to. I provided my home email address to you .

Correct me if I am wrong but I do believe at the moment medtronic is the only company at this time who makes the DBS. I know my son's neurosurgeon was working with another company at one time with developing a DBS for them but I can not go into that here on the boards.

Perhaps they are giving you the worse case for the battery life so if/when you decide to do the DBS you will not be disappointed when your battery needs replacement. I do know they say battery replacement can be 1 year to 4 years. Jeffrey is at 2 1/2 years and will be having his batteries replaced probably in the next 6 to 8 months maybe sooner. We will know more March 22 just how low his batteries are. Replacement is done on an outpatient basis here in the states.

As far as his surgery went, Jeffrey was home the following day, surprise huh? He had to be quite for a week or so but he was home. Two weeks after his surgery he went back for the transmitters to be put in and for the leads to be attached. The transmiters are located in the chest and stomach, they are not deep at all rather superfical.

I know you are concerned about the healing process but the surgery takes place in the skull and the upper body which is rich in blood supply and blood flow. This should make the healing process much better then if it were in the lower part of the body. Just something postive to think about.

I know on the dystonia site I provided you with there is a new movie they made called "Twisted". You can order the DVD, American price is 37.00. I'm sure if you were to write to them and explained your situation they may even send it to you for free, its worth a try. The movie is all about different types of dystonia and the treatments the people in the movie have been through including the DBS. The site also has an area which describes different treatments, DBS is mentioned.

Jeffrey and I know several of the people in the movie Twisted, Remy being one of them. Before Remy had her DBS her body was in a 45 degree angle. Can you even imagine sitting with your body leanning to the side like that all the time? Her spirits were amazing! Jeffrey, his sister and I attend the Family and Children symposium for Dystonia whenever possible. The last symposium we did not get to attend because my mother was dying. This coming August we will be attending the 4th annual one in Chicago, I can not wait to see everyone's experssion when they see Jeffrey walk in! They have no idea Jeffrey underwent the DBS surgery yet.

Once again Frogga if you need anything, questions, want to see pictures of Jeffrey's head from the surgery or just want to ask Jeffrey questions please feel free to ask okay? You still have my email address? As I type Jeffrey is out and about which puts a BIG smile on my face! for so long he stayed in his bedroom because of Dystonia but since the DBS he is FREE! The best of luck to you with your decision. Hugs, Jewells