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Deep Brain Stimulation (DBS) for Parkinson's

Parkinson's Disease | Last Active: Oct 6, 2023 | Replies (70)

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@maxaz1

I want to bring you up-to-date on "Part 2" of Walt's DBS. But first things first: I want to offer our heartfelt gratitude for all the good thoughts, prayers, and loving wishes were sent our way. They helped, and Walt's second round, Part 2, of DBS Surgery was as different from his nightmarish Part 1, as could be.
I am thrilled to share with you that this go-round was as good as it gets. Our daughter, a nurse at Mayo, recruited the anesthesiologist and CRNA (a close friend) she wanted on Walt's case this week. She explained to them that the totally "awake" part of his surgery, while the surgeon drilled through his skull was torture. Walt remembered every moment, and there were, indeed moments when we were not sure he would consent to return to Mayo for the same procedure on the other side of his head. They promised her that they would make sure he would not suffer as he had the week before. While we were waiting to hear how it was going, the anesthesiologist came to the Surgery Waiting Room to tell us that he had to go toe to toe with the neurologist, who wanted Walt to be drug-free for the "awake testing" during the surgery. The CRNA had to call him into the OR to get involved, because the neurologist would not give in and allow her to administer the meds. Ultimately, the anesthesiologist told the neurologist that Walt was his patient, and had made a specific request - and that he intended to honor it. He did so, and all went well. Walt has no memory of the drilling part, no memory of pain or discomfort, and despite the neurologist's concerns, the "awake" testing portion went well. This, I believe, should be a reminder of the value of an advocate for any patient. I do believe that even without a "connection," when a patient and his/her family meets the anesthesiologist (and each doctor involved in the patient's care), it behooves us to ask questions and to make our needs and desires known. The CRNA told us that during the battle, the neurologist told her, "It's not that bad!" and she replied, "Oh? Have you had this surgery?" On his way out of the OR, the neurosurgeon whispered to her, "Good anesthetic." Anyway - except for some headaches and fatigue, Walt is good as gold, up and around. He explicitly stated, while still in recovery, "I couldn't have recommended this surgery before, but now I would." Part 3 will be 11/29, and his battery pack will be implanted while he is "under." Thank you so much for all your good thoughts. They helped both of us!

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Replies to "I want to bring you up-to-date on "Part 2" of Walt's DBS. But first things first:..."

I'm so pleased to hear that Part 2 went so much better. I'm happy for Walt. You make such a good point, @maxaz1, on the importance of advocating for yourself and having others advocate for you as well.

There are times when a patient does have to "step up to the plate" and make their needs known and insist that they are followed. For some folks, who have never been assertive with the medical profession, that can be difficult. I'm glad that you were able to do it.

I will be praying for Walt as he enters Part 3 at the end of the month.

WONDEFUL NEWS Maxine!!!!!! I am thrilled that stage 2 went so well for Walt. All that he has gone through during stage 1 has been terrible. I can totally understand that he was very reticent to forgo the second stage. Very hard to agree to torture. The scariness and pain from the procedure sounds way more than awful. I have been thinking and praying for you both.
I agree with you COMPLETELY that we need to be proactive(having someone like your daughter and the anesthesiologist surely helps a great deal) in our care. I always come with my list when I see a physician. I won’t stay with the doctor unless he/she listens and treats my questions with respect. I also strongly believe that someone else should be in the room with you when you meet with a physician. You have been a GREAT advocate for Walt and a loving supportive wife. More power to you!!!!!
Thanks again for the update!! I hope all continues to improve.
Take care,
Susan

Hi Maxine. Been thinking about you and Walt and hoping all is going well. Happy holidays!

@maxaz1
Hello Maxine,
I was thinking about Walt and wondering how Stage 3 went. I hope all went well and his battery pack is in place without causing too much discomfort.