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

After taking my hat off to Jewells and her son, it looks like it may be time for me to eat it.

What a wonderful, amazing report. Good for you guys!

Mike

Hey Jewells

Thanks so much!!! I think (?!?) I replied to your PM!? Your son's response is inspirational - thanks for sharing - it is one of the reasons I so want to do it! It's just... RSD and surgery... as ever.

I am almost certain that I am going to go for it if the surgeon and anethitist agree. I saw my rheumatology consultant earlier who said that I will never get any better than what I am now, so what have I got to lose? My dr said to go for it, there isn't much worse I can get, so it's worth a go.

I also have full body dystonia which is not very controlled (botox 3 monthly - 5 units or whatever, benzhexol 36mg, baclofen - up to 110mg, diazipam up to 20mg and that's just for ths spasms!). Therefore they feel I'd probaly need new batteries reguarly - it might be that I'm getting a different stim?

Thanks again!!!

Rosie xxxxxxxxxxxxxxxxxxxxxxxx

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

Thanks Jewells :D

Your info is always great! I am so pleased for Jeffrey - and hope to giving a similar story after the surgery :D!!

I think there are 2 different stimulators? I'm not sure - but I think the research I did showed me there were a couple? but I could be wrong. I reckon the consultant probaly is going worse case scenario becuase he knows I can't travel well, so that will always be a large factor in anything I decide on (it's about an 8 hour round trip to see him which then usually puts me in bed for a couple of days after because of the pain).

I had a look at the website - looks great! I have checked some of it out before but not in as much depth. My dr said the same thing about the brain, and given that she's just told me she doesn't feel there is anything she can do for me she told me to just go for it - it would be pretty hard for my RSD to get worse!!

Thanks so much for all your help! I know this should be an easy decision, it's just I find it hard!!

Love to you and Jeffrey!!

Rosie xxxxxxxxxxxxxxxx