The deep brain stimulation journey continues long after surgery
A columnist shares her husband's ongoing experience with DBS for Parkinson's
There are a lot of hoops to jump through leading up to deep brain stimulation (DBS) surgery, such as neurocognitive testing, health insurance approvals, medical team meetings, preoperative testing, and surgery scheduling, to name a few. It may seem like once all of this is done and the surgeries are completed, the DBS device will take over and do its job. But it’s just the opposite; pre-op and surgery were just the beginning for us. The process of maintaining the device, battery, and setting adjustments (in combination with medication) has been ongoing.
Recently, I wrote about the journey to DBS surgery for my husband, Arman. He was diagnosed with early-onset Parkinson’s disease in 2009, when he was 38. His DBS device was successfully placed after two separate surgeries in the summer of 2017.
The first surgery was to place the leads in Arman’s brain, followed by the pacemaker placement seven days later. I stayed overnight in the hospital with him after his first surgery. Unfortunately, no private rooms were available, and although we pulled every string we could, we had no choice but to be in a shared room. The patient on the other side of the curtain was a young man who’d had surgery that day to remove a malignant brain tumor.
Arman and I are both uncomfortable with the idea of pain medication, and we’d made a pact that we wouldn’t allow him to be given any strong medications, such as opioids. As soon as we settled into the hospital room, I realized this plan was a mistake. He explained that he felt like someone was beating him in the head with a bat. So I made an executive decision to go against our pact and buzzed the nurse for pain meds — and lots of them.
The next day, Arman was released from the hospital. While I was excited to get him home, I was nervous about caring for him. Besides being a mother of three, I had no formal medical training, and I was scared. My daughter Mandy was by my side, and we got through it together. We managed to follow all of the instructions provided by the hospital.
The best part of that week was the “honeymoon” period of DBS. For a few short days, it seemed Arman’s Parkinson’s disease had disappeared completely. It was a strange but glorious feeling for all of us. Unfortunately, as we knew it would, that feeling eventually passed. But it was great while it lasted.
The following week, the pacemaker was implanted. This surgery lasted only a few hours, and we went home that day. The day was a dream compared with the 12-hour surgery just one week before. Arman, unfortunately, found it very painful.
The next step was turning on the device a few weeks later. It was exciting to see how it’d all work together. Adjusting the device to reach an optimal setting requires patience and a dedicated medical team. We’re fortunate to have both.
Since no known cure exists and Parkinson’s disease is constantly progressing, the DBS settings must be adjusted often. In addition, oral medication changes must also be considered as symptoms change and DBS settings are adjusted.
It’s been almost six years since Arman’s deep brain stimulation surgery. Reflecting on it, I’m amazed at him and his strength. Unfortunately, while it’s completely stopped the dyskinesia in his leg, it’s adversely affected his speech and increased his balance issues. But even with these obstacles, we’re thrilled with the results.
We’re still searching for optimal device settings for Arman, in combination with his medication. Of course, we’re always hopeful that the next adjustment will be the perfect one, but we’re also comfortable and happy with our perfectly imperfect life.
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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
M Weiss
Thanks for your story. My husband had deep brain stimulation surgery in 2007 and 2009 with just one surgery during the implantation and the battery placement. His surgeries did not take anywhere near 12 hours. I suppose that depends on the patient. He’s were maybe six or seven. I say that just to let other readers know that.
I do know at one point when his neurologist was adjusting the electrical stimulation that he was able to do something so that my husband could not speak at all. The doctor thought it was funny. Dave did not but that leads me to think that adjusting the stimulation may help with Arman’s speech.
Dave continues to get great benefit from both stimulators 15 and 13 years after their placement.
Jamie Askari
Thanks for the information! I agree that the timing of the surgery varies greatly from patient to patient and also can depend on if it is MRI guided or not. He receives all of his care at the Cleveland Clinic, and often times they go this long at this instutution. That is wonderful that your husband has had great success with DBS! Thanks for reading!!