[shakyjon]

I guess this is a careful what you wish for sort of thing. In two months time, I'm going back to my neuro to have a conversation about DBS. He also raised my doseage of mirapex to .25, and will probably do so again at that appt. He's going to have me talk about it with the MDS, too. I wanted aggressive, and boy did I get it. This is quite the decision to make, so can I ask if anyone has any info or opinions they'd like to share? Anything would be helpful as I ponder whether to take this course of action.

[tulip girl]

jon,

I had unilateral STN DBS in 2006 and have no regrets. For the most informtion, I recommend the book "Living with a battery operated brain" by Jackie Hunt Christiansen and also joining the dbssurgery@yahoogroups.com. They have files with lists of questions to ask and recommendations on the best DBS programmes in the country. Only you can decide on whether to have it done or not. I was in/out within 28 hours (it's only brainsurgery, after all). Programming can be frustrating - but oh it feels so good.
TG

[shakyjon]

Thanks, tulip girl. I need all the opinions I can get.

[Jim091866]

What are your primary symptoms? DBS works great for tremors, not so great for balance, rigidity (my symptoms). Depending on where you live, health ins, etc. I would try to get to one of the PD Centers of Excellence. They have all the resources under one roof so to speak and by far the best qualified to do this procedure/answer concerns/deal with any issues that arise.

I had my bilateral done 3 yrs ago, have had the IPG (generator) replaced and still going strong.

They did the brain surgery but didn't find anything!

[Jim091866]

Symptoms respond alarmingly to stress, albeit illness, mental stress or otherwise. Eliminating stress or lessening it is going to go a loooong way for your PD. I cannot think of anything worse than being way over medicated causing me to get severe movements than stress for me. From what I remember on the other page you're pretty young. Get a 2nd and maybe a 3rd opinion, extensive workups-all the bloodwork, rhuematoid/copper levels/MRI whatever you can. DO NOT TAKE SINEMET UNTIL YOU ARE SURE OR AS A LAST RESORT. I happen to believe that once down that road it is one way. Your body stops making what is being replaced artificially.

Get and keep all your records, this is a new chapter in your life that you wontt wantt to have be chasing stuff after years. Best of luck. Hope I've helped. Please email if you'd like. I was diag. at 30 y/o, 44 now.

[shakyjon]

Oh, the bloodwork's been done, everything in existence seemingly. My dx went from, you're too young, to better chance than not, to likely, to probable, to you have PD. It's been a long road, with more tests than I care to take. My primary symptoms are tremor and rigidity. Bradykinesia is setting in, but in no stretch anything compared to some of the people I take care of. My neuro, if I decide to do this, will be sending me to the area's PD expert. She'll have the final say on whether it gets done. Thanks for the help.

[steelr10]

Originally Posted by Jim0918

What are your primary symptoms? DBS works great for tremors, not so great for balance, rigidity (my symptoms). Depending on where you live, health ins, etc. I would try to get to one of the PD Centers of Excellence. They have all the resources under one roof so to speak and by far the best qualified to do this procedure/answer concerns/deal with any issues that arise.

I had my bilateral done 3 yrs ago, have had the IPG (generator) replaced and still going strong.

They did the brain surgery but didn't find anything!

Jim,
What is the IPG generator? My husband had the DBS bilateral done in June 2009 and isn't having much success. We think there could be something faulty with the battery is that the generator you mention? Would appreciate any help.