Our Dystonial DBS journey

Posted by coachwock @coachwock, 6 days ago

First read the 2018 story from Maxine and Walt on our journey with DBS and PD wondering how that’s going? Any advice etc?

Our Real Time our journey Gary and (Kari with focal dystonia left foot, and presently last few months had DBS surgery!)

•Kari was diagnosed in 2016 with Focal dystonia left foot at UNMC Omaha Ne

•We went through the hoops, Evaluation
, Dr appointment for 7 years, Meds
carbidap levadopia, amantadine
And many others about 15 pills daily

Taking Botox every 3 months

Now update August 2025
Kari’s had 3 part surgery at UNMC omaha ne with Medtronic 2 leads right and left side of brain and 2 battery packs left and right side of chest

Jan 2025 DBS physical testing

June 2025 1st surgery left insertion side one overnight stay

July 13 2nd surgery right one overnight night

July 23 2025 two batteries pack left right side clavicle
Waiting period to get stitches out August 14 battery turned on last week August

Any advice from here on regarding
1) results after DBS
2) complications to be aware of that medical does not tell you
3) Those I’ve had DBS are you still taking Botox?
4) what is Medtronic erosion?
5) anyone know the percentage of replacement of Medtronic leads if they don’t work how many people have had to do that approximate?

If you want to email with questions is great

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

Cheryl D | @nmrcdigman | 6 days ago

My husband had a Medtronic pacemaker implanted several years ago for “Sick Sinus Syndrome” which is a heart irregularity. It has worked fine, and he’s had no issues. He has 3 years left on his battery.
The one thing that is important, if he falls and hits his chest, he has to go in to make sure the wires have not detached. So far they have not. Either they did not tell us this when it was implanted or I totally gapped it, which would be unusual.
The signals sent to the clinic are automatic and they’ve had no issues with transmission.
Also, when he had an MRI of the brain to confirm he had LBD, they had to have a cardiac team nearby. They must turn the pacemaker off, preform the MRI and then turn it back on. Therefore scheduling any MRIs takes longer because involves the cardio people as well. Good luck.