Fowki....Would like to email you privately as i am new to this site. Unsure how to do that.

My husband had DBS surgery in June 2009 for slow rigidity. He has had numerous programming sessions and still isn't doing as well as we had expected. I know the device is working but it is very sporadic. He can be on for 15 minutes and then off...then on for 5 minutes and then off. Sometimes he will be on for an hour for but then off for 4 hours. We think there may be something wrong with the battery, however they keep telling us it is working fine. He takes a 25/100 sinemet every two hours. Has anyone else that has had DBS surgery had this problem? We are going back to Mayo this week for yet another programming session.

Any help would be appreciated.

My husband had DBS surgery in June 2009 for slow rigidity parkinsons. He has had numerous programming sessions and still isn't doing as well as we had expected. I know the device is working but it is very sporadic. He can be on for 15 minutes and then off...then on for 5 minutes and then off. Sometimes he will be on for an hour for but then off for 4 hours. We think there may be something wrong with the battery, however they keep telling us it is working fine. He takes a 25/100 sinemet every two hours. Has anyone else that has had DBS surgery had this problem? We are going back to Mayo this week for yet another programming session.

Any help would be appreciated.

I think there is a special group on Yahoo Groups of folks that have had DBS; they have seen it all...the good, the bad, and the ugly. One of our regular posters here, Chasmo, has DBS and is in the group. You may want to PM him. He is kind and very knowledgeable on all the tweaking that goes on. It really seems like a Mayo Clinic should have their act together on this though; it is by no means a novel treatment. Sorry you guys aren't getting much relief yet, but usually there is some fine tuning involved from what friends with it have experienced. Best wishes to you both.

Laura

Hi Steelr10, Just checked this post out again and looked at the date you have given for your husbands DBS, of June 2009.....That is getting on for two YEARS ago. How often does he see anyone in respect of the DBS? I would have thought that in that amount of time most of the problems would have been ironed out. Please go talk to people in the yahoo groups that Laura has mentioned, and/or other people with DBS. There are people who seem to have less good experiences, and there will be a body of knowledge among the DBS peoples experiences that you can draw on.

Best wishes for the programming session at Mayo, I hope that some benefit will come out of it. Do keep on posting and let us know how it goes. There are PD advocates out there who have had DBS and if things do not get better perhaps it might help if you were in touch with one of them.

Lindy

Thanks Laura. I am new to this website. How can I find Chasmo. What does PM mean? We went to Mayo once a month for 8 months straight. Haven't been there since october now and are going back. Need someone to help us figure out if this is the device not working properly.

As I had posted previously we are wondering if the battery isn't working properly. Has anyone had involvement directly from Medtronics? Is there testing they can do on the battery? All they ever do at the appointment is check it and say yep lots of battery left. he has had xrays to make sure everything is in tact. We believe it is equipment failure. If it wasn't going to work for his condition, I don't believe he would have ANY "ON" time. Would love to hear from anyone who can help us. Thank you...

I have signed up for the DBS surgery yahoo group but have not been accepted yet. Thanks again everyone. We are going to Mayo in a few days so would appreciate anyone's input on husband's programming dilemma.