DBS disappointment

Hello guys. I had my DBS at Bristol about 6 weeks ago and it was switched on last Friday. I cannot state how disappointed I am with it. I argued with my surgeon that as a slow PWP I should have the GPi, and not the Stn. This was not adhered to. I took it on the chin. But what has been disastrous has been the virtual inability to speak when the machine is switched on. I discussed this with the dbs nurse yesterday: she said it could be turned down which I did. It did the trick but
was working subsequently sub-optimally on my other symptoms. So I seem to be left with a choice of receive the benefits at the expense of my speech. My balance appears to have begun to suffer too. I’m really annoyed that the probability (as opposed to possibility) of losing the power of speech isn’t made more forcefully and bluntly by the community. What’s the point in DBS if such a probability is possible?

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Hello Jeeves,

I’m really sorry to hear your your voice problems,how disappointing and upsetting! I haven’t heard about the possibility of losing your voice following DBS. It’s so frustrating for you to have that as another problem. I don’t really understand the difference with the system options. Hopefully things may get better as time goes on.
I send you best wishes and good luck

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Hi Jeeves,

It is really horrible that you had to go through that and if anything it is worse.

I always, whenever I am looking at invasive surgery get a second and sometimes, when it is serious, like my surgery for seizures, a third opinion.
I hope things get better soon.

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Hello Jeeves
I was sorry to read of your dbs experience and can’t blame you for feeling as you do, it must feel like you have been cheated. I entirely agree that the risk to communication in dbs should be explained but my own experience appears to have been quite different to yours. Although I ultimately decided against having dbs because of my own particular set of circumstances, I did complete the assessment process and it was made very clear to me that one of the biggest risk factors was to one’s speech and communication skills. Indeed had I gone ahead I would have undergone some speech therapy sessions prior to surgery in preparation. Our differing experiences suggests to me that this is another example of inconsistency in Parkinson’s services across the country - a subject that crops up on the forum with some regularity

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Thanks for taking the time to write. Really appreciated. :blush:

Hi Jeeves. I’m sorry if DBS hasn’t worked for you. I had DBS at Bristol in March last year. In my case it was for diskynesia . I volunteered for the SPARKS study, so my kit might be a bit different to yours. I don’t know the difference between GPi and Stn; these are new terms to me; so I can’t tell you which I’m on.

The possible negative effects and risks of the operation were discussed with me. I don’t remember discussing speech problems in particular, but I may have forgotten…

I have not been disappointed in the outcome of the DBS. My levodopa (in Stalevo) was reduced by around 40% after the DBS was switched on, and since then I’ve been able to reduce it a little further to almost 50%. I was advised that DBS could not affect my balance, but actually my balance is much better. I still get dyskinesias but they are much reduced in longevity and severity.

My Parkinson’s had been progressing frighteningly rapidly before the op. I’d needed an increase in drugs every six months since I’d been diagnosed in 2017. So the best result of the op. for me has been the reduction in the amount of levodopa I have to take, and the fact that it has now remained stable for 19 months. That has given me a greater sense of control over my life.

Full disclosure: I have developed a couple of new symptoms since I had the DBS. But I have no reason to think the DBS is the cause, rather than the inexorable course of the condition, and they are quite minor. Some of the time my speech sounds slightly slurred to me (although not noticeable by other people), and I have frozen a couple of times. That is all.

You are not alone Jeeves, though oddly my partner’s voice improved to a small degree, thugh we were warned it might affect it negatively. But most other symptoms were not improved, especially at first. After numerous tweaks over the course of years, the DBS (stereotactic ablation) was persuaded to make mild improvements to mobility, but there has never been any question of ditching some of the medication because the effect of DBS has been so limited. We know it is doing something, because my partner is so bad when it is turned off, but it seems to be more of an underlying effect than something comparable to the impact of medication. In fact the meds are starting to increase again so perhaps the DBS has reached the extent of its ability to help. Sorry you are disappointed, so are we. I find it particularly troublesome when I see DBS being talked up on other sites as if it is a reliable fix. Maybe it is for many people. But not everyone. I wish you luck in getting yours tweaked to an effective level.

Thank you for trying to help. Your time is greatly appreciated :blush:

Thanks for such a generous post. Full of interesting personal experiences. Here’s hoping things will improve!

Thanks very much Steph. I appreciate you taking the time to respond

Thanks for answering. Yep. Everybody’s different eh?

Hi Jeeves, how are you getting on? Do you listen to the movers and shakers podcast? Last weeks covered Voice, and DBS. A technique called LSVT was discussed. lee Silvermans Voice Training. I thought it might be interesting for you. I hope things are improving for you
Best wishes