DBS Surgery

Hi, Teresa! I am doing well 6 weeks post my adaptive DBS GPi activation. I no longer have rigidity, bradykinesia nor foot dystonia. I feel like an iron coat has been lifted off my shoulders. Today I have had my second programming session which went really well.

I'm so pleased to hear of the good results, @dgt1978! That is wonderful. Do you need to have regular adjustments after activation?

I had DBS surgery in 2020. I was treated for Scoliosis and Dystonia. I wasn't diagnosed with Parkinson's until 2024. However, I don't have the tremors associated with Parkinson's. I do stumble and my voice has changed, but my hands are steady. I highly recommend the surgery to anyone that suffers from Parkinson's.

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Hi @shambunny - it looks like your previous message may have been incomplete. Did you have something else you wanted to share?

You mentioned your voice had changed with Parkinson's. Will you share more about that?

@lisalucier , I had DBS surgery at the Mayo/Jax in 2024 following my PD diagnosis there in 2020 or thereabouts. The first surgery was on my left brain/right hand since that side tremor was more bothersome. I was delighted with the result, a marked decrease in the tremor and no unanticipated side effects. After several "adjustments" I have only slight action tremors when attempting fine motor functions. I'm quite happy and was eager to get the other side done several months later.

After the second surgery, which I might add are not exactly a day at the beach if you know what I mean, my tremor was still quite noticeable, but admittedly reduced. I was surprised though to immediately notice a rather severe speech impediment that I never had before. Despite what I had thought was rather thorough research on the procedure I didn't remember speech problems as being mentioned.

During my career, I was often called upon for public speaking engagements and might have hesitated about the prospect of my reduced capacity to do so, but being now retired it is less of an issue to me, but still an annoyance. I was referred to a Speech Pathologist for treatment which has been helpful in making myself understood but provides no cure to the underlying problem. which apparently is the stimulation on my right (brain) side overflowing to the speech center of the brain. Who knew? Apparently, I should have as my Movement Disorder Neurologist tells me it is a fairly common occurrence, but that speech pathology is the only and standard treatment. Turning off the stimulator wouldn't do the trick, not that I would consider that on balance anyway.

My point here is that I sort of opted very enthusiastically into the DBS decision, and while I wouldn't now change what I have done, I would have been more careful. After all, it is brain surgery, and some risk of side effects may be expected,

Hello @shambunny and welcome to Mayo Clinic Connect. I appreciate you posting about your journey with various health issues. I'm really glad to hear that the DBS procedure was helpful to you.

You mentioned that your voice has changed. Can you describe what type of changes you have noticed? Have you had any speech therapy to address the voice issues?

I’m considering DBS surgery and trying to learn about the risks and benefits. Once my neurologist switched me to Ritarvy a year ago, my Parkinson’s dramatically improved. But a social worker advised to bring my own supply if I am hospitalized. It’s a very expensive med and at least the hospitals near where I live will not order it

@tedalmon My speech therapist posted a big sign across from my bed that read THINK LOUD. I didn’t know that my wasn’t not projecting strongly enough. But the real game changer was switching to Ritarvy,?a very expensive med

@mobyneal300
Were you taking Ritarvy before the surgery? Have you had any infections post operation?