I have a couple Parkie friends who are contemplating DBS. DBS stands for Deep Brain Stimulation, a brain surgery that is not a cure for Parkinson’s but ameliorates some of the symptoms for a while. I’m far away from this therapy and it may not even be appropriate for me, but I thought I’d find out a bit more.
What is Deep Brain Stimulation?
I know, this sounds like something mad scientists in the Deep State do to you. The actual description doesn’t make you feel any warmer and fuzzier: someone (hopefully with a LOT of experience and VERY steady hands) implants electrodes in your brain sending continuous electrical signals to specific target areas of the brain, which block the impulses that cause neurological dysfunctions. You have a little pacemaker in your chest just like the cardiac version. Oh, and just to fill you full of confidence, they really don’t know how this works. The American Association of Neurological Surgeons’ (AANS) webpage says, “DBS is presumed to help modulate dysfunctional circuits…” That “presumed” gives me some pause.
Is it true you’re awake during the brain surgery??? (Yikes!)
Yes, it just gets better, doesn’t it? More from the AANS webpage: “A small opening is made in the skull under a local anesthetic. The patient is awake during the DBS surgery to allow the surgical team to assess his or her brain functions. While the lead (electrode) is being advanced through the brain, the patient does not feel pain because of the human brain’s unique inability to generate pain signals.” Gee, doesn’t make me feel calmer.
What’s the history and track record of DBS?
Scary as the procedure sounds, DBS has been around for a long time. As far back as the 1950s, it originally was used to treat intractable pain. By the early 1990s, DBS was expanded to movement disorders such as essential tremor, Parkinson’s disease, dystonia and multiple sclerosis, with more than 35,000 DBS implants worldwide
Who are appropriate candidates for DBS?
DBS is usually done in people who have had Parkinson’s for at least four years and still get a benefit from medication but have motor complications, such as significant “off” time (periods when medication isn’t working well and symptoms return) and/or dyskinesia (uncontrolled, involuntary movements). Dementia is, alas, an all too common symptom of Parkinson’s, and typically a deal-killer for DBS – you have to be lucid during the surgery, and DBS may make cognitive skills fuzzier.
What are the expected positive outcomes of DBS?
DBS typically works best to lessen motor symptoms like stiffness, slowness and tremor. It doesn’t work as well for imbalance, freezing when walking or non-motor symptoms. A general rule is that DBS will likely improve Parkinson’s symptoms that respond to medication. (The opposite is also true: symptoms that don’t get better with medication probably won’t respond to DBS.)
What are the side effects of DBS?
DBS may exacerbate thinking or memory problems. Evaluation and education of the patient to determine whether to the surgery is appropriate is a critical step, and may typically include detailed memory/thinking testing to detect any cognitive problems that could worsen after DBS.
What happens after surgery?
You’re not done yet, nor do you get to throw out your drugs. A few weeks after surgery, a movement disorder specialist uses a handheld programmer to set parameters, tailored to each individual’s unique symptoms, into the neurostimulator. (That’s the brain “pacemaker”.) The DBS settings are gradually tweaked over time and medications are simultaneously adjusted. Most people are able to decrease (but not completely discontinue) Parkinson’s drugs after DBS. Determining the optimal combination of drugs and DBS settings — that which gives the most benefit and the least side effects — can take several months and even up to a year.
How long does DBS last?
DBS is not a cure for Parkinson’s, only a relief of some symptoms. So the disease keeps progressing (or as I like to think of it, regressing). Andres Lozano, MD, PhD, a DBS pioneer, was one of the authors of a study following up on patients who had had DBS 10 years previously. He reported, “We found that the motor symptoms associated with PD — tremor, rigidity, and bradykinesia, or slowness of movement — were improved after the procedure. Moreover, the benefit to these symptoms was sustained up to ten years. However, we found that in some aspects, in particular posture and gait, the patients were worse. Non-motor symptoms, such as cognitive impairment, fatigue and digestion issues, unfortunately also continued along their natural course without much influence from the surgery. ”
Does my insurance cover DBS?
For my American readers, this is the critical question. I found this reassuring response on a medical site by the University of Michigan: “DBS is FDA-approved and covered by most health insurance companies. Some insurance companies require prior authorization before having surgery, and some do not fully understand DBS and may initially deny coverage. However, usually with some detailed explanation, the decision is reversed. Denial may be based on the false assumption that DBS is experimental.”
YouTube extra: Andrew Johnson, whom I had the pleasure of meeting at the Montreal World Parkinson’s Congress in 2013, filmed himself with and without his DBS pacemaker turned on. Quite dramatic (and scary).