Our Dystonial DBS journey

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.

Thank you very the information and best wishes to you Cheryl and husband

Kari and Gary update
We got the stitches out last week Thursday so far good Kari has been feeling good and hair is growing fast. Lumps and itch has leveled off, the foot turning is coming back, which is good that is what the dr wants so they can see the results from the DBS etc.
Next week they turn on the battery will update all afterwards

Any help appreciated
results after DBS
A) complications to be aware of that medical does not tell you afterwords of battery turned on?

B) Those I’ve had DBS are you still taking Botox? pills?

As always any advice appreciated!
Gary Kari

Update
Kari symptoms have returned they is a good thing so they can see what the DBS does : left foot turned in, voice crackle, freezing, slow reaction fogging mind st times but Kari is our Rock star in all measures within limits still exercises, drives, does house and yard work does some shopping so as a caregiver my only adobe is (“Love , Patience, Be there )
Kari goes in next week 28-29 at UNMC omaha have Battery turned on so we will let you know how the outcome has been
Out Dr Woodward is great and RN Erin is awesome! SURGEON : Josue M Avecillas Chasin, MD
Neurological Surgery god send!
Anyone on our team have advices or experience the aftermath of battery turned on?

Update Kari this week 8/28th and 8/29th on battery turn on Wow what a process thoroughly called it Transformation of miracles

Thursday 8/28th - testing 2 hours this day she had taken meds for that day so they can tell when the battery is turned on what “bad” side effects came with it like twitching, numbness in face, pulling on skin, hand movements and involuntary muscle or facial etc movement anything that makes it worse) are included with the battery packs and meds - there are two packs one on each side of her chest oh 4 contacts 0-1-2-3 and had to test each contact with the electrical circuit voltage - RN was great as she kept telling Kari when she was increasing voltage and Kari would tell her things she could not see physically like emotions, sensations etc. You go through each contact each side and Kari was semi wiped out after going through those interactions this day.
29th - same set up but only took her non Parkinson meds - now RN wanted to see the “Good side effects- improved of foot stop turning in, voice crackle, quicker responses, tapping foot and finger faster etc- just opposite of day before and WOW so many improvements so many more ah ha moments so many tears of joy and excitement so far we are on morning after the packs are on and Kari slept well via night from what I can tell.
Prayers, hope a d having God in your corner is good! Like Garth Brooks song God answered unanswered prayers so true -
God is Great!!!
Will keep posted

@coachwock - glad to hear about the improvements, ah-ha moments and tears of joy and excitement so far in Kari's DBS journey.

I also wanted @hopeful33250 @sillyblone @janna2 @cartercd @angels81 to meet you and hear about Kari's story. They may have input for you on the journey.

What happened with Kari today @coachw?

Kari continues to progress- no foot turns, sleeping better, still getting use to the hardware in her body- leads, batteries etc- over all walking is so much better, response talking quickness to ideas and able to make decisions in a timely manner- updates to health concerns- feeling weighted on her chest from batteries, at times feels rough over stitches, left calve had pain to hurt turned out to be muscle cramp
Over all it is going very well

Hello @coachwock,

How great to get your update about Kari's progress. I look forward to hearing about her continued progress as she adjusts to this new support for her PD symptoms. Is she still feeling weighted from the hardware or is she getting used to this new equipment?

Teresa and All
Kari has not had any foot turn for over 2 weeks so far, even when I stretch her left leg no turn or fighting me to keep it straight, walking is awesome and her response are quick and simple and steady- her writing is larger then before. Downside so far has been dizzy a little, let call is hurt to touch a little and wheezy at times, voice has gone back forth from crackling otherwise a Transformation of Miracle’s so far

Oops it should read above left leg not let call—

? For the team
Has anyone experienced
1) forgetting or memory loss after turned on DBS? Mold to severe?
2) dizziness or weakness?

3) Any studies that dns leads to dementia etc?