Deep Brain Stimulation: What I Have Learned
Last updated: October 2021
This month, I observe the 6th anniversary of my deep brain stimulation (DBS) surgery for Parkinson's disease (PD). As I reflect on that experience, I am reminded of some of the important decisions I had to make.
Weighing the risks and benefits
First, did I need DBS? After all, this is brain surgery. And while minimal, there are some serious risks. One is reminded of this when meeting with their neurosurgeon. A brain hemorrhage due to surgery is one risk with permanent brain damage being the result.
I had to weigh this against the benefits of the surgery. For me, the primary benefit is less dyskinesia due to a reduction in the amount of Levodopa I was taking. My dyskinesia was called biphasic dyskinesia since I experienced it right after my Levodopa "kicked in" and when it was wearing off.
It became so debilitating that there were times when I needed a wheelchair to get around. After conferring with my neurologist and neurosurgeon I decided to have the surgery.
What makes a good candidate?
However, before I could have the surgery, I had to prove to be a good candidate for it. One question was how well I responded to Levodopa and the second was whether I experienced any depression.
Finally, my general health was assessed as well as whether I had any dementia. After my 3 plus hours of assessment, involving many cognitive tests, it was determined that I was a good candidate for DBS.
Deciding on the hospital
Next, I had to decide where to have the surgery. I wanted an experienced team working with me. I visited the Movement Disorder Clinic at the National Institutes of Health (NIH) a few years ago to get a second opinion on my treatment plan for Parkinson’s (they will assess anyone with PD at no expense and give them feedback on their treatment plan.)
I was impressed with the team at NIH and when they told me they offering clinical trials for DBS, I decided to have my surgery there despite the fact that it meant I had to do a lot of traveling (I live in Missouri and the clinic is in Bethesda, MD.)
Of all the decisions I had to make this one is perhaps one of the most important considering the type of surgery and the risks involved.
Choosing the neurostimulator
When I had my surgery, I didn’t have a choice of suppliers for the neurostimulator. Medtronic had the only one on the market. Since my surgery, there are several neurostimulators to choose from. Some can now be programmed remotely making it much more convenient for the patient.
Also, some neurostimulators are rechargeable and last approximately 15 years as opposed to 3-5 years for those with permanent batteries. My first neurostimulator had a permanent battery and had to be replaced after 3 years.
I replaced it with a rechargeable battery as I did not want to have surgery every 3 years to replace it. Recharging can be done on daily basis, weekly or monthly basis depending on what the patient finds most convenient. I recharge my battery every morning for about 15 minutes.
Working with your doctor
Programming the neurostimulator takes place a few weeks after surgery. The settings vary by patient and are set by your neurologist. One question is how much control if any, the patient wants over the settings.
I’ve had some neurologists that did not want the patient to have the option of changing the settings. I’ve had others who do not hesitate to give the patient some degree of control. I want to be involved in my therapy and to have the capacity to change my settings if needed.
Having the DBS surgery has made a significant difference for me and greatly improved my quality of life. I am thankful that this therapy is available to those with PD and am excited to see what future advancements are made in neurostimulators.
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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