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siak

Long term DBS-- Anyone had the surgery longer than 5-10 years?

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siak    43

Has anyone had the DBS surgery more than 5 or 10 years? I am wondering how you are doing now. How often do you go for programming? Has your PD gotten worse over time and does turning up the simulation help? I had my DBS 2 years ago and it solved my freezing for a while. Recently, it has started coming back and i am losing my ability to walk again. I would like to know the experience  of long term DBS people .

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MIMILASTER    79

Hi !

 

I had initial DBS Surgery in March 2000, so almost 17 years ago. One electrode being not optimally located, I had a second surgery 2 years later. During these 17 years, my condition worsens of course and parameters were changed, not necessarily increased ( I guess you mean voltage) but also  moved from monopolar to bipolar, from one contact to another. You have to take into account not only voltage but also frequency and pulse width.  Sometimes modifying one parameter even slightly can have dramatic results, for better or for worse ! Sometimes parameters are good for a full year or two, sometimes it takes several months to get back to a satisfying situation.  The number of parameter setting combinations is large and the key is to have a “programmer” who is willing to test all  options until the best solution is found.  You don’t want to settle for second best but want whoever is in charge of programming your stimulators to try his/her best to find the optimal option.

 

Did my Parkinson’s evolve in these 17 years? Yes, of course it did (remember it is a degenerative disease). I would tend to think progression was slower than if I did not have DBS.  It’s difficult to tell but that’s what my doctors say. It will be 30 years next April that I was diagnosed (at the age of 34), which makes me probably the most senior member of this group (senior in  PD diagnosis and in DBS surgery). That does not give more value to my judgment but at least I have the necessary experience to put things into perspective.

I have never questioned my decision to have DBS and  would do it again if I had to.

Good luck to you !

Mireille

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siak    43

Mireille, thanks so much for your input. I was very surprised and disappointed that I only got one response in a week. That tells me that there are not many people around that have had long term experience with DBS. Besides yourself, do you know others with long term DBS? It is kind of frightening to me that it seems there is no good data on how the DBS effects people past 5 years. (At least I have had trouble finding any.) It is encouraging that you are still happy with your results. Do you know where I could get more info on those who have had the surgery more than 5 yrs? thanks 

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Linda Garren    734

Has anyone had the DBS surgery more than 5 or 10 years? I am wondering how you are doing now. How often do you go for programming? Has your PD gotten worse over time and does turning up the simulation help? I had my DBS 2 years ago and it solved my freezing for a while. Recently, it has started coming back and i am losing my ability to walk again. I would like to know the experience  of long term DBS people .

 

Siak, do you remember the woman from Texas (originally from England) who used to post here?  I can't remember her name, but she was very helpful in helping those who asked questions about long-term DBS which she has had.  Maybe someone else can remember her name and let you know.

 

Linda

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siak    43

thanks linda, I didnt know the woman that you spoke of. I hope that if those who you mentioned read this they will respond. thanks . I hope you are doing well.

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stump    452

Siak, do you remember the woman from Texas (originally from England) who used to post here?  I can't remember her name, but she was very helpful in helping those who asked questions about long-term DBS which she has had.  Maybe someone else can remember her name and let you know.

 

Linda

 

KimAgain?  She comes and goes.  There are a few threads she's either started or added a lot of good info to over the years.

 

Edit to add - here's a couple of her threads.

 

http://forum.parkinson.org/index.php?/topic/15191-4-year-dbs-follow-up/

 

http://forum.parkinson.org/index.php?/topic/20660-dbs-and-me-7-years-in/

Edited by stump

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waruna01    44

Hi !

 

I had initial DBS Surgery in March 2000, so almost 17 years ago. One electrode being not optimally located, I had a second surgery 2 years later. During these 17 years, my condition worsens of course and parameters were changed, not necessarily increased ( I guess you mean voltage) but also  moved from monopolar to bipolar, from one contact to another. You have to take into account not only voltage but also frequency and pulse width.  Sometimes modifying one parameter even slightly can have dramatic results, for better or for worse ! Sometimes parameters are good for a full year or two, sometimes it takes several months to get back to a satisfying situation.  The number of parameter setting combinations is large and the key is to have a “programmer” who is willing to test all  options until the best solution is found.  You don’t want to settle for second best but want whoever is in charge of programming your stimulators to try his/her best to find the optimal option.

 

Did my Parkinson’s evolve in these 17 years? Yes, of course it did (remember it is a degenerative disease). I would tend to think progression was slower than if I did not have DBS.  It’s difficult to tell but that’s what my doctors say. It will be 30 years next April that I was diagnosed (at the age of 34), which makes me probably the most senior member of this group (senior in  PD diagnosis and in DBS surgery). That does not give more value to my judgment but at least I have the necessary experience to put things into perspective.

I have never questioned my decision to have DBS and  would do it again if I had to.

Good luck to you !

Mireille

Having had DBS for a long time, do you prefer bipolar settings over monopolar? Is there a specific frequency and pulse width that you prefer in addition to polarity?

Edited by waruna01

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