Question about GPi Target for DBS - Cure Parkinson's

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Question about GPi Target for DBS

EmsXen33 profile image
15 Replies

I'm scheduled for DBS surgery in June (and I'm excited I'm going to be able to get the newly approved adaptive device from Medtronic). But I have a question that my neurologists have not really been able to clarify for me, so I was hoping for some lived experience from any of you (the "hive mind").

I was diagnosed ten years ago. My main symptoms are rigidity and bradykinesia, along with (very problematic) levodopa-induced dyskinesia and dystonia. Reducing the severity of those two symptoms and the medication side effect are my three goals for DBS. I currently take 5 1/2 tablets of IR 25/100 Sinemet between the hours of 7 am to 9 pm (every three hours), and I take no medication overnight.

My neurosurgeon discussed with me that my target would likely be the GPi since I already have issues with my voice. We discussed how targeting the GPi would likely not allow me to lower my medication. So my question is this: if DBS reduces the severity of my main symptoms of rigidity and bradykinesia, then wouldn't I necessarily take fewer meds post-DBS? If post-DBS I am still taking up to 5 1/2 tablets of Sinemet, then what would be the point of DBS? And then how can my levodopa-induced dyskinesia be improved?

Any advice would be appreciated! I'm just trying to understand.

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15 Replies
Juliegrace profile image
Juliegrace

I had DBS (GPI) in November and it has been life changing. I have only recently been able to slightly reduce my meds-I am down to 6-700 mg daily from 900. I have never taken any c/l at night. I still have a little bit of dyskinesia and dystonia in my left arm at times, but everything else has improved dramatically. If you click on my profile you can look at my posts on my DBS.

Sherry1960 profile image
Sherry1960

Excellent questions! You have to be confident before proceeding. Ask your MDS again and tell them your of your reluctance. From what I am understanding about the Closed Loop Technology Adaptive is it is on-demand control. Meaning if it relieves your symptoms it may decrease your meds. Google some info on it. Hope this helps!

pbandjr245 profile image
pbandjr245

Hi,

I was in a similar situation. I was taking 1 1/2 25-125 Sinemet along with Amantadine every 3 hours. I was diagnosed 13 years ago at 47. I didn’t have tremors but I had stiffness and developed terrible Dyskinesia. I had DBS turned on at Mt. Sinai in November and am now down to 1 10-125 Sinemet 3x per day with no Dyskinesia. My conditions are basically at the optimal level would be. “On” without Dyskinesia. I am going to try and upgrade to the adaptive version next month.. My previous Dyskinesia was disabling it. Got so bad that it was difficult to drive. BTW, I highly recommend getting the surgery under general anesthesia!

Erniediaz1018 profile image
Erniediaz1018 in reply topbandjr245

Why the recommendation of general anesthesia?

EmsXen33 profile image
EmsXen33

Sounds very similar. Dx at age 48, no tremors but bad dyskinesia and I haven't been able to drive for awhile. Here's hoping I have similar outcome as you. And I am definitely getting it done under general anesthesia! Thanks for your response.

pbandjr245 profile image
pbandjr245 in reply toEmsXen33

Where are you getting it done?

EmsXen33 profile image
EmsXen33 in reply topbandjr245

Jefferson in Philadelphia

pbandjr245 profile image
pbandjr245 in reply toEmsXen33

I did it at Mount Sinai in New York. Highly recommend but Jefferson must be good too

Lulover profile image
Lulover

I had my first programming session mar. 5 and a second one April 25. So it’s all new to me,..

Will learn more as it goes, but the adaptablecDBS will be an advantage for you.

PDisn-tME profile image
PDisn-tME

I’d get a second opinion regarding which target is best for you. I had your symptoms with very tiny bit of voice issues. The Stn target is the one they chose for my symptoms. and my meds were reduced . Each case is different though.

EmsXen33 profile image
EmsXen33 in reply toPDisn-tME

I will definitely revisit the Stn vs. GPi target with the team! I don't really mind not reducing my meds as long as I get relief - I'm just trying to understand WHY the GPi-targeted DBS doesn't typically result in reduced meds. It sounds as though you had a good outcome - if so, I'm glad to hear.

PDisn-tME profile image
PDisn-tME in reply toEmsXen33

If you’re experiencing levodopa induced dyskinesia now, ask your team if they will get worse with electrical stimulation if meds aren’t reduced. The stim is like “electronic medicine.”

pbandjr245 profile image
pbandjr245

there are studies that say people with general anesthesia have better outcomes at six months than people that are awake. I also told that TBS while awake can be quite traumatic if you have anxiety issues like me. I also did not have my head shaved!

MikeCosta profile image
MikeCosta

I have STN-aDBS for tremor-dominant, so I don't have direct experience. However this info from ChatGPT might be helpful:

Your question is excellent, and I completely understand your need for clarity. You're absolutely right to be thinking through the logic of how GPi-DBS could improve your symptoms while still requiring the same medication dose.

Here’s how it typically works:

GPi vs. STN for DBS: GPi-DBS is generally preferred when dyskinesia is a major concern because it has a more direct anti-dyskinetic effect, even without reducing medication. In contrast, STN-DBS often allows for greater medication reduction, which indirectly reduces dyskinesia. But because you already have voice issues, GPi is likely the safer choice, as STN can sometimes worsen speech.

Levodopa-Induced Dyskinesia (LID) and DBS: GPi-DBS can help with LID even if you continue taking the same amount of medication. It does this by modulating the abnormal signaling in the basal ganglia that leads to dyskinesia. Some patients do find they can slightly reduce their meds over time, but that’s not the main reason GPi-DBS is chosen.

Medication Reduction with GPi-DBS: While it's true that GPi-DBS doesn’t usually allow for significant medication reduction, it still improves motor symptoms by smoothing out fluctuations and making movements more controlled. Even if you're still taking the same amount of Sinemet, your body may process it more effectively with DBS, leading to fewer "off" periods and better quality of movement.

What’s the Point of DBS If I Still Take the Same Meds? The point is to improve your quality of life by reducing rigidity, bradykinesia, and especially dyskinesia, even if the medication dose remains unchanged. Without DBS, your dyskinesia could get worse as you increase meds over time, but with GPi-DBS, that progression may be much better managed.

What If You Need to Reduce Meds? While GPi-DBS isn’t as effective at reducing meds as STN-DBS, you can still fine-tune your medication after surgery. Some people do end up needing less Sinemet, but it’s not a given. The good news is that adaptive DBS (aDBS) may offer even better real-time adjustments, which could help manage both dyskinesia and symptom relief dynamically.

I hope that helps.

Lulover profile image
Lulover

i just was programmed march 5, so I do not have much experience yet.

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