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RickCopple

Just Had DBS - Some Questions

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Hi Doctors,

 

As my title suggest, I've recently had bilateral STN DBS (frameless and fudiciless) surgery on 9/29, then battery placement on 10/4 and turned on 10/10. So right now about a month from getting it turned on.

My Evaluation so far: tremors, works great on most all settings that have been programmed in so far. I'm off all medications, and doing really well. My surgeon was Dr. Patel in Austin, TX. My MSD who is doing the programming is Dr. Peckham in Round Rock, TX (just north of Austin). Other, even seemingly non-motor functions, have improved as well. My PD face and monotone voice is gone, people see more expression in my face and voice than before. Constipation is better. And I've even started up recently a window washing division of my wife's housekeeping company now that I have "steady hands". 

The negatives, so far, are predicable. Slight memory issues (like I have a bad case of brain ADHD or something). I have trouble focusing enough on things to completion, and organizing my thoughts well enough to not forget things, and I often have problems coming out with the right words from my mouth. I have always been a slow thinker, especially once PD hit, but now it is like I'm wired, and my brain can't keep up with itself. Plus, I have had balance issues. This has been complicated by a cataract n my left eye which was diagnosed about two weeks ago. This led to a prescription change in my left eye prior to cataract, which required a substantial lens adjustment in that eye. Once I put on my glasses, I've fallen around 5  or 6 times. Nothing major happened, bruised rear, skinned area on my hips, etc. After some research, I deduced that I needed to take care of that cataract so am going in for replacement of that lens in the next couple of weeks are so.  Then I'll evaluate the balance issues from there. 

That said, I do know walking and gait issues are a DBS result. Before getting the new glasses, I felt that what I had was, my best but still inadequate description, antsiness.  I do Zumba regularly as well as play pickle ball, and in both activities, especially Zumba, I found I had trouble controlling my movements well enough. At one program setting, I actually appeared to be "drunk" when I walked around. But even at better settings, lower settings, that don't make me walk that way, I can't do Zumba very well. I'm having to do it from a chair, and I've started teaching my Gold class again, entirely from a chair. For that it seems I need to have the settings low and take some levelopa just to do chair effectively. I've had three programming sessions this month, with the next one scheduled for 11/15, next Wednesday. The setting I'm on currently is the two middle spots on the Metatronix DBS leads on, but alternating. She said sometimes that helps with my "antsiness" issues or balance issues. Personally, I can't tell a difference between that and program C, which is the two middle spots on the leads on all the time. I have it turned up enough that it keeps my tremors at bay, but no higher. (Currently at 1.9 v on my left side, and 2.5 v on my right side--Of the body, not the brain.) 

I think it is the combination of the cataracts and the DBS that has led to my current series of falls. I am hopeful that once the cataract situation has been resolved, there will be no more falls. However, this has led me to believe that the real issue behind my initial description of "antsiness" was more my body's attempt to adjust for the slight balance issues created when doing more aggressive type moves as required in Zumba and Pickle Ball. The adjustments to normal walking are so minimal as to not be noticeable except when turned up high. That's where I'm at currently. I'm hopeful that with further programming we'll be able to reduce this down even more.

So after that long introduction, I have some questions for you. 

1. I read on another pinned thread about models of the Metatronix DBS being able to be programmed for current as opposed to voltage. You listed the names of devices that have that ability. However, all I have is a model  #: 37601. Is that one of them?

If so, under what situations would it be helpful, if any, to program according to current? I'm sure my MDS is aware of that option, if it is part of the device, and would have or planning on using it if she believed it could be of any help in my situation, but I'd like to know for myself if and when it might be considered.

2. I understand that with any one person, things can change and be different. I'm a bit conflicted though, about what to do about this balance issue. Do I find a setting I think will work for tremors and my body will adjust to the balance issues over time? Is that even possible? Or do I actively work to find the settings that will give me a balance between the least balance issues with the best PD symptom control? Or is another possibility a combination of levodopa with a lower DBS setting? I guess what I'm asking is will my body potentially, gradually adjust to this new setting over time? I know it also might not, but is it possible that it could?

Thank you for your reply. 

 

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First, I am very sorry for the delay in response to your question.  The system underwent an upgrade and the software change captured some questions which we have now located. Please accept our sincerest apology.

Yes your device likely has a constant current setting, but most studies have not shown a difference with regular voltage on clinical symptoms.  It basically controls the shape of the current and there is a slight cost in battery life.

The balance issue is usually not addressed by DBS but in some cases settings can make it worse.  Make sure you are connecting dose to dose with your medicines as this may help with some gait and balance problems....and of course exercise and PT.

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Thank you, Dr. Okun, for your reply.

I'm now about almost 6 months out from my surgery. Things have improved a good big. I do have a lower setting for my DBS when I do play Pickle Ball and do Zumba, and a higher "normal" setting. Over the past 3 - 4 months, as the brain swelling has gone down, my balance and gait have significantly improved. When I do Zumba, that's when I notice it most. A little difficulty in controlling the movements of my feet. But over the past few months that has become better and better. I'm hoping by the time 9 months to a year is past, I will feel pretty normal most of the time. We'll see, but already I'm very glad as I feel pretty much normal most of the time instead of about 4 hours out of a day. 

So I'd suggest the above issues I was experiencing about a month after the surgery have been resolved.

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This is great news that the symptoms that were causing problems largely resolved after DBS (over a number of months).  Thanks for the update.

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