This article was originally published by The Michael J. Fox Foundation for Parkinson’s Research
Tuesday, 20th June 2023
A little background
Before we dive in, let’s talk about Deep Brain Stimulation (DBS) and batteries (also known as neurostimulators or impulse generators). In DBS surgery, leads, or thin wires, are implanted into brain areas that control movement. Typically, one lead is placed on each side of the brain. Sometimes, a person will have only one lead on one brain side or, occasionally, more than one lead on each side. Each brain wire controls the opposite side of the body — the left lead eases motor symptoms on the right side of the body and vice versa.
Following placement in the brain, leads are joined to extender, or connector, wires that are tunneled under the skin and attached to the battery. In the battery, each lead is inserted into a specific “channel.” The battery, which also controls the amount of electricity flowing through each wire, is usually placed below the collarbone. Your doctor programs specific settings for each lead, based on your symptoms and any side effects. (Read more about DBS.)
After a few years or more, the battery must be replaced. Exactly when that is depends on the specific device, whether the battery is rechargeable (those last longer), and your programming settings (higher settings drain the battery faster). Your doctor monitors battery strength and recommends replacement, when needed. In the replacement procedure, usually performed under general anesthesia, the old battery is removed and a new battery — sometimes updated, based on the latest technology — is placed in the same location and connected to the existing DBS leads. This typically takes less than an hour and you go home the same day.
Any surgery, hospital stay or other stress, such as infection, can temporarily worsen Parkinson’s symptoms. This procedure, although not as involved as initial DBS placement, is no exception.
The family’s story
A person with Parkinson’s, who had DBS surgery decades ago, had a routine battery replacement. His prior three battery replacements went smoothly, so he, understandably, thought this surgery would be no different. However following battery replacement, his symptoms suddenly and significantly increased. He was unable to move and fell several times. Unfortunately, his doctors mistakenly chalked the changes up to “older age” and progressing disease. But with strong and persistent advocacy by the person and his spouse/care partner, the problem was eventually discovered.
The problem: When the surgeon replaces the battery, the left DBS lead must be connected to the left channel and the right to the right channel within the battery. In this case the leads were accidentally swapped — the left lead connected to right channel and right lead to the left channel — which means the programmed settings were inadvertently swapped too. The right lead was operating with the left’s settings and vice versa. Once discovered, it was an easy fix — simply swap the program settings so the correct settings run through the correct lead. However, the delay in determining the problem and the challenges experienced prior to discovery were unfortunate and avoidable.
Battery replacement complications
Even though it’s a fairly minor procedure, battery replacement — or any procedure when living with Parkinson’s for that matter— should be taken seriously. Although complications don’t happen often, possibilities include:
What to know and do
The most important: Make sure you choose, if possible, a surgeon and center with a lot of DBS experience to replace your battery. It’s a seemingly simple procedure, but as you now know, complications can happen. How often varies from surgeon to surgeon and center to center. It’s typically less often among those with the most experience. At the same time, those that do the most DBS will see rarer complications simply by nature of the numbers.
If you do not have access to an experienced DBS center, it is important you choose a surgeon who has ample experience with these types of battery changes.
Ask your DBS doctors for a referral to a qualified surgeon. Ask others in the community for their recommendations, too. And ask your surgeon how long they’ve been doing the procedure, how often they do it, and what their personal complication rates are.
After the procedure, pay close attention to symptoms. Pain is common after battery changes. But if you have new weakness, numbness, or changes in talking or walking, you should seek medical attention immediately. And if you or your loved ones notice a significant difference in PD symptoms, talk with your doctor right away. It could be a temporary worsening due to the surgery, pain medication and other new factors. If that’s the case, you should, hopefully, see improvement in the days to weeks after. If you aren’t getting better or you’re much worse, ask whether you might have a complication and how you and your doctor can look for and remedy it, if so. Remember, you know yourself or your loved one best, and you are your own best advocate.
What we’re doing
Deep Brain Stimulation has come a long way since its initial approval nearly three decades ago. There are now several devices from three manufacturers, incorporating incremental innovations and technology upgrades. (Read about available devices.) Scientists are now working on the next generation of DBS devices — so called “closed loop” systems that can monitor one’s symptoms and deliver stimulation on demand. Research, like the MJFF-supported RAD-PD study, also aims to learn more about the “real world experience” of DBS — who gets the treatment, when, for what symptoms, where in the brain, with what device and with what side effects. This will help develop clearer guidelines and stronger recommendations for DBS care.
While future DBS systems (some with more than two leads) bring the promise of better and broader symptom control, longer battery life, and smaller devices, they can also bring more potential complications, like the one highlighted here. It’s critical that community members continue sharing their experiences — both good and bad — and MJFF amplifies these voices to educate people living with disease, their families and their clinicians.