DBS or duodopa pump?

[Gumm]

hello there. I began my journey to have DBS a year ago. I have had Parkinsons for 12 years and after a really bad fall at the end of 2022 I finally worked up the courage to request the procedure. However my condition is complicated by damage to my spine caused by the fall! The surgical team have concerns that having DBS May make my symptoms worse and want me to be aware of alternative treatments such as the Duodopa Pump. Any comments about these treatments and their relative efficacy would be much appreciated! TIA.

[TeamPG]

Big decision. What are your symptoms? Have you ruled out focused ultrasound for some reason?

[FMundo in reply to TeamPG]

I would certainly rule out FUS before DBS as it is irreversable. Consider the fact that DBS can be "turned off" (brain cells are not destroyed). Particularly if tremors are bothersome I would reccommend you consider DBS.

[MBAnderson in reply to FMundo]

How are you doing Frank?

[Bolt_Upright]

You should join some of the Zoom calls MBAnderson is so nice to host. We have had people (like today) who have DBS and we have people that have the duodopa pump and a person getting the brand new type of pump that uses a needle. My thought is the pump is the most low risk high reward option. Join use and talk to people that have done all three. You will be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[pearlette]

The fact that the surgeons have raised concerns about the interaction between the impact of the fall and the interaction with effects of DBS suggests that the DBS effects could be different in you compared to most of the people here that you give you their experiences.

Do you have anything pressing on your spinal cord seen on an MRI ?

Do ypu have hypertonia from an Upper motor neuron lesion from the spinal level ?

Bear that in mind when you make a decision.

[pbandjr245]

Hi,

I have had eight major spine surgeries and am fused to T-11. I had my DBS turned on in November and completely eliminated my Dyskinesia. I had a rigorous physical and cognitive evaluation at a PD Center but my back is stable and was not an issue. I did DBS while asleep which was easy and the hardest part is when they put in the generator. The technology is amazing and adaptive DBS will be out shortly. I would go for it as it’s reversible. Don’t hesitate to ask any questions.

[Gumm in reply to pbandjr245]

thanks very much. Very helpful!

[pbandjr245]

Where are you located? Age is a factor as I started having symptoms when 40. A lot of my PD scores went down to-0- from 2/3 after DBS.

[SanMateoPD]

I'm investigating Vyalev, which is a new and possisbly simpler treatment similar to the pump. Check it out! Some people say it's great and it was just approved in the US (10/2024 FDA approval I believe).