What Changed After DBS Surgery No. 1

What Changed After DBS Surgery No. 1

Deep brain stimulation (DBS) can affect both cognitive and motor symptoms in Parkinson’s patients who undergo the surgery. The procedure gives hope to those who are substantially inhibited by tremors and dyskinesia — people like my dad. After doctors determined he’d make a good candidate for the surgery, Dad had his first operation almost two weeks ago. The surgeon placed electrodes in his head and zipped him back up.

Since his first surgery, Dad has observed his physical changes with curiosity. Experts allude to a “honeymoon phase” that often lasts for days or even weeks after the first DBS procedure. For whatever reason, the initial phase seems to spark changes within the body even though the electrodes aren’t yet powered by their battery.

An instruction pamphlet from the University of California, Davis, states: “Sometimes there is a ‘honeymoon’ period following electrode implantation but before the battery is activated – during this period, some of your symptoms may be much better even though the DBS has not been connected or turned on yet. This will fade away and you can expect to return back to your previous level of functioning.“

What has that experience been like for my dad? Let me tell you.

Dyskinesia after DBS

The main reason Dad wanted to undergo DBS was to manage his dyskinesia. As you can imagine, losing control over the way your body moves is physically and mentally taxing. Dad’s medications help him maintain independence, but when they’re leaving his system for the night, dyskinesia hits. Since the completion of his first surgery, Dad says that his dyskinesia is either entirely gone or barely noticeable.

Additional changes

Dad has also observed symptoms that are worse than or the same as they were before the surgery: “My right hand seems to be worse than normal but not by much. I suspect this is because my drugs are not working. And I’m freezing about the same as I was before I had the surgery.” Knowing that this window of change isn’t permanent, Dad observes the shifts but looks to the future for long-term effects.

What can we learn from the honeymoon phase?

Although Dad is experiencing the honeymoon phase, the idea that his body is responding to the electrode placement is fascinating. Why has there been a change in the way his body reacts to Parkinson’s? What causes the honeymoon effect? And why does it affect individual patients in different ways?

What we do know is that when the honeymoon period ends, Parkinson’s symptoms return to their original state. And once you start DBS, it generally takes several months to experience the full effects, since you and your neurologist have to program the electrodes to operate according to your unique symptoms.

DBS phase 2

Tomorrow, Dad will enter the operating room for the second time. This time, his surgeons will connect the electrodes in his brain to the battery in his chest. This surgery is more invasive and may be more painful. The recovery period will likely be longer. It’s easy to worry, pointing to the potential surgical complications.

But despite his current and upcoming challenges, Dad’s attitude remains positive. Just yesterday, he was making jokes about being able to communicate with radio stations due to his new hardware. Imagine what he’ll be able to do when the electrodes are connected to their battery! We remain hopeful, looking to the future with curiosity.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Mary Beth is a Freelance Writer who specializes in personal narratives. Her work focuses on the outdoors and the transformative powers of nature. But when her Dad was diagnosed with Parkinsons in 2013, her search to understand the disease materialized through language.
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Mary Beth is a Freelance Writer who specializes in personal narratives. Her work focuses on the outdoors and the transformative powers of nature. But when her Dad was diagnosed with Parkinsons in 2013, her search to understand the disease materialized through language.

6 comments

  1. Claire says:

    Warning….My husband had a complete personality change after DBS. I was living with a stranger who almost destroyed our marriage. The neurologist Never warned this was a possible outcome.

  2. Chantal says:

    Sorry Claire , thanks for the warning.
    My Neurologist and Gastroenterologist both recommended DBS , I am not ready to commit but I am seriously exploring the Pros & Cons . Thank you all for your input.

  3. Hi, I went through both fase 1 and 2 DBS, and also can tell that the honeymoon period is just that. Now I am am in the regulation process and so far is working fine. The tremor has decreased substantially and even I dropped 1 of my medications Requip, and remain on sinemet. I know still will be needed more regulation, but I truly believe it’s beneficial.

  4. Linda Dodt says:

    Did it hurt to be awake for the screwing in of the head frame or while drilling into your skull to get to the brain area to stimulate? I assume you were awake?

    • Jim Skylis says:

      I was not awake during the surgery. Surgeons are using a newer technique called MRI guided focused Ultrasound machine. Please check out the Cleveland Clinic web site under DBS.

  5. Diane Hutchins says:

    I had DBS surgery in November 2014. I was asleep for the procedure, waking up with a slight sore throat and a shaved head. I was back at work full-time a month after the second procedure that connected the electrodes in my brain to the neurostimulator. Although my handwriting was worse after the procedure (my first experience with micrographia), my IQ went up by 3 points! The electrodes had been placed in the GPi (globus pallidus interna), rather than the subthalmic nucleus (STN), to control the dystonia that was making my left leg twist and lock up, making it increasingly difficult for me to walk. The procedure exceeded my expections, giving me relief from the dystonia, my tremors, and dyskinesia. A local paper picked up my story and also interviewed my surgeon, Dr. Burchiel of OHSU. Here’s the link: http://www.chronline.com/after-surgery-rochester-woman-delays-effects-of-parkinson-s-disease/article_fe01c112-a1ed-11e6-bda8-870957c1e7b1.html.

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