[steelr10]

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.

[lindylanka]

See my post on the other thread. You do sound as though you are both going through a very frustrating time with this. Before you go to the appointment write everything down, especially if you are not seeing the same programmer as before. Be firm and informative in the discussion of the problem. And let them know that there IS a problem regardless of whether it is the battery or not. Again come back here and post if there is no improvement, there will be someone out there who can advise on best next steps..

You did not say what your husbands condition was prior to DBS, or how much meds he was on. He is still taking quite a lot of sinemet, this is also something you could discuss with someone who has gone through DBS and also had similar problems. I am sure there will be someone in the DBS 'network' of patients, and I can think of a few people who may be able to discuss this with you, and offer some insight into how to approach the problem of improving matters.

Again best wishes, and good luck too for the forthcoming appointment.
Lindy

[steelr10]

Originally Posted by lindylanka

See my post on the other thread. You do sound as though you are both going through a very frustrating time with this. Before you go to the appointment write everything down, especially if you are not seeing the same programmer as before. Be firm and informative in the discussion of the problem. And let them know that there IS a problem regardless of whether it is the battery or not. Again come back here and post if there is no improvement, there will be someone out there who can advise on best next steps..

You did not say what your husbands condition was prior to DBS, or how much meds he was on. He is still taking quite a lot of sinemet, this is also something you could discuss with someone who has gone through DBS and also had similar problems. I am sure there will be someone in the DBS 'network' of patients, and I can think of a few people who may be able to discuss this with you, and offer some insight into how to approach the problem of improving matters.

Again best wishes, and good luck too for the forthcoming appointment.
Lindy

Thanks Lindy.
Prior to DBS he was on same amount of sinemet but was taking amantadine and mirapex. We are grateful that he is only on sinemet now but think he should be having more on time with this DBS. He doesn't have tremors he has slow rigidity. My husband has been documenting EVERYTHING the last few days and we will take that with us. When he is on he is "normal". He can walk, talk and feels great. It just doesn't last but a short time. I would love any help from anyone that can give us some guidance. I am not familiar with this website and do not know how to email people directly instead of on the threads.

[Conductor71]

Originally Posted by steelr10

Thanks Lindy.
Prior to DBS he was on same amount of sinemet but was taking amantadine and mirapex. We are grateful that he is only on sinemet now but think he should be having more on time with this DBS. He doesn't have tremors he has slow rigidity. My husband has been documenting EVERYTHING the last few days and we will take that with us. When he is on he is "normal". He can walk, talk and feels great. It just doesn't last but a short time. I would love any help from anyone that can give us some guidance. I am not familiar with this website and do not know how to email people directly instead of on the threads.

Oh, I had all but forgotten this resource. There are Ask the Doctor and Ask the Surgical Team on the National PDFo } on the National Parkinson Foundation website forums:

http://forum.parkinson.org/index.php?/index?

Dr. Okun is an expert in the field of PD and on DBS. He might be able to suggest what the problem is or at least share some advice on finding the right person to help you and your hub.

Good luck!

Laura

[reverett123]

http://neurotalk.psychcentral.com/se...in+stimulation

The link above will take you to a page of search results of this forum. It offers a listing by thread of every use of the term "deep brain stimulation" within a thread. That means that many of the hits will be useless because DBS was just mentioned in passing. Nevertheless, you can pick out some that are obviously relevant based on their subject line. Good luck to you both. -Rick

[reverett123]

It looks like close to one in ten pacemakers develop serious problems, no matter how good the team. That's pretty sloppy hardware. Imagine if 10% of PCs failed.

Post-operative complications:

asymptomatic intracranial bleed (10% of procedures)
symptomatic intracranial bleed (2%)
seizures (3%)
headache (25%)
infection (6%)

Device-related complications:

lead replacements (9%)
lead repositionings (8%)
extension wire replacements (6%)
implantable pulse generator replacements (17%), approximately half of which were due to malfunction


Read more: Deep Brain Stimulation - procedure, blood, removal, pain, complications, infection, operation, cells, types, risk, rate, Definition, Purpose, Demographics, Description, Diagnosis/Preparation, Aftercare http://www.surgeryencyclopedia.com/C...#ixzz1J8oKKduC

[lindylanka]

Steelr10, I have asked a couple of other people with DBS if they can look at this to see whether they are able to offer a perspective that I cannot do, having never had DBS. They are great people, and am hoping that they will post here for you...... you are doing the right thing documenting stuff, and again I wish you all the best with getting this sorted out. I'll keep an eye open for your posts.

Lindy

[bluedahlia]

I'm too early in the game to provide any helpful information. Still in the programming stage. I did have a problem with my gait at first, but that has since been corrected with further programming. Maybe the pulse is off...I think that's how often it sends the signals to the brain. That's what I would bring up at your next session.

When DBS works, its a miracle. I'm not near done, but even like this, its a great improvement.

[Jim091866]

Hi, my name is Jim. I had bilateral DBS in Oct 97. My symptoms much like your husband were primarily rigidity and slowness, no tremor. I was taking 2 25/100 every 2 hrs. Now I have decreased that to 1 1/2 every 2 hrs. At first I was not happy with the results, I was expecting better. I have had many programming sessions to come up with what I felt was the best settings. Many questions surrounding this, initially I would go to my neuro and he would change the settings til next month, etc. That's the wrong way to do it. I used a graph to show how I was on/off through the day and when I took my meds. Shows over time how you're doing without you having to remember or relying on how you "felt" it will show how you're doing. DBS is said to not work as well for ridgidity/balance as it will for tremors. Finally, I didn't think I was getting much benefit from my DBS until I did a sleep study for apnea overnight-I had to turn off the DBS. When I woke up the next morning prior to my meds I felt as if I was a quadrapalegic- I could barely move at all.

[mjc0827]

My wife and I both have PD and had DBS, me in 2007 and my wife in 09. We both have had successful experiences and benefited greatly through this cutting edge technology. We also consul people on a regular basis and provide open and honest dialogue on the subject.

That being said, we've read your post and feel one of two thing isn't right. One could be that the Neurosurgeon failed to hit the intended targeted area that would provide optimum benefit or two, your husband has a programming issue. I suspect that perhaps after numerous prog. sessions with the same clinic it would be a disservice for me if I didn't suggest a second opinion. Not having enough information on your geographical location, surgery location, the number of programming sessions since 09 the protocal used and the experience of the Nuerosurgeon.

We'd like to help you but will wait the outcome of your future appointment.

Michael & Gretchen Church

Originally Posted by steelr10

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.