Episode #31: Deep Brain Stimulation (DBS) surgery - before it's turned on

The Secret Life of Parkinson's: In this episode, we check in with Brian who has gone through deep brain stimulation surgery: the right side in June, the left side in July, and the battery implant in August. We get a chance to talk to him about the ups and downs, right before his DBS equipment get's "turned on".

[@dl7243]

I to am a young onset case. I was diagnosed back in 2017 when I was 41. I worked in a nursing home in IT. The nursing staff noticed my slowing down, lack of right arm swing and change of gait. So the administrator called me in and went over the symptoms and my right leg started tremoring. She told me it looked like Parkinsons. I was seeing a neurologist for another condition so had my administrator write up her observations and took it to my neurologist. He saw the symptoms especially the tremor and set me up for a DAT scan. The day I had the scan I saw my neurologist later in the day and he had already gotten an MDS opinion and told me the results were consistent with Parkinsons. I met with the MDS the next day. My tremors continued to progress and last year I had DBS. The neurosurgeon who did my surgery did both right and left ran the leads and inserted the battery in a single operation.

[@kenmackenzie3558]

I to Am an Early Onset patient, diagnosed at 42 I am now 54 and I had DBS a week ago last Thursday. The day after I went home and felt great had a few headaches but everything seems to be going well. It's awesome to hear you to banter back-and-forth. I'm not a big question asker either. Thanks Ken

[@MotherMoon1]

Once his skin heals he will get scare tissue and he won’t have an issue. Basically his body will be used to it.

[@frankiecolonjr4312]

I love you guys watched almost all the videos. I’ve been thinking about gettingDBS done, but I’m scared.

[@thesecretlifeofparkinsons]

I hear you. I'm scared too now that I'm actually in the position to potentiall do it.

[@MotherMoon1]

Thank you for sharing this video! You definitely have a new sub. Also, is there an update with him on the DBS surgery, I would love to know!! Have an awesome Friday.

[@thesecretlifeofparkinsons]

I created a whole playlist with his journey here: kzbin.info/aero/PLBmcB-1pex_F-AsPyTjccxtd6u371b5OP

[@1983mojo1]

Saw my doctor today and he wants to look into DBS for me,not a fun thing too think about. Diagnosed 5 years ago. I am old 63

[@thesecretlifeofparkinsons]

You are not old! 63?! You have so much life to live. All I can say is do you research on which hospital and surgeon would perform it, and what device they would use. Most DBS patients said they wish they did it sooner. But, obviously listen to your doctor first!

[@suregrip8853]

Love the videos you make, they are very helpful. I was diagnosed with Parkinsons in October of 2018 when I was 58, mainly slowness and rigidity, no tremors. I have been looking at DBS surgery for the last year, reading research, case studies just about anything I can get my hands on. I have looked at many videos on DBS and I understand the risks involved but what I haven't seen is any negative reports, articles or videos. Everything is very positive even if it doesn't meet their expectations or the surgery didn't go smoothly (infection or surgery re-done) the patient was still happy they had it done, can this really be true? I go for a consultation for DBS surgery in October, funny, I never thought at the age of 62 I would be considering letting someone drill holes in my head to install electrodes in my brain. Funny how things change in life, you just never know. Keep the videos coming and I hope everything goes well for Brian.

[@brianbaker4648]

Thank you, I had a good experience and would do it again.

[@shmatalady5082]

Hi. Just curious how your surgery went and if it has helped you? I’m 60 and am considering DBS surgery .

[@suregrip8853]

@@shmatalady5082 Was this question for me (suregrip8853) or Brian? If for me, I haven't had DBS surgery yet, insurance issues. I go for another consultation this month, we will see what they say.

[@Robloxeli]

My husband just had the DBS surgery at Vanderbilt and he will go later this month to have it turned on for the first time

[@thesecretlifeofparkinsons]

I hope things are going well!

[@eeeter]

Congratulations Brian. Was it Medtronic's or Boston Sci ? Did you have a choice ?

[@brianbaker4648]

Yes, I had a choice. The offered all three and I opted for Boston Scientific

[@GoProGoalieUzi]

Good job Brian you are looking good ❤️

[@brianbaker4648]

Thanks

[@jendaley1]

Brian, thank you for sharing your journey through DBS with us. It’s a big decision for many to move forward when considering DBS, but your honesty and openness about your own experience has been great to hear. I wish you good luck with your next stage, and it sounds like your son will be a great support to you in the future. Looking forward to your next installment!!!

[@brianbaker4648]

Thank you

[@jeancattoi2796]

What about medicine, do you still have to take your meds?

[@thesecretlifeofparkinsons]

As always, every PD patient is different. I know some people that were able to go off meds while others reduced the amount they were on.

[@brianbaker4648]

It can vary from person to person. So far I have gone from 3 pills 4 x a day to 1 pill 4x and hopefully it will be taken away.

[@daleodenbaugh9516]

I've had the procedure done on both sides with a year in between. I think we have finally found the sweet spot , the last surgery was a year ago. So be patient and write down any odd moods, things that are different like speach, hand movements doing certain tasks etc. Good luck.

[@thesecretlifeofparkinsons]

I'm glad you found your sweet spot! From what I've heard, that takes time. Good idea to write down anything that is odd/different.

[@LynelWelvaert]

Thanks for this!

[@thesecretlifeofparkinsons]

Your welcome! Thanks for watching!

[@Shave_n_Butcher]

👍

[@therealkathleenkiddo]

secret life of pd? OH, Do I have stories for you!

[@thesecretlifeofparkinsons]

Do tell!

[@ScareBearGirl]

I would ask sooo many questions 🤣

[@brianbaker4648]

Feel free to ask anything.

[@qujelqujel1]

​@@brianbaker4648May I?