DBS, The Bionic Option for Parkinson’s Disease

To what lengths are you prepared to go, to maintain your quality of life with a neurodegenerative illness? Would you exercise regularly? Take your pills faithfully on a strict schedule? How about undergoing a delicate, hours-long bit of brain surgery to become a bionic human?

Yes, you could be like the six-million-dollar man, (42 million in today’s dollars) the hero of that mid-nineteen-seventies TV show about a test pilot who nearly dies, and then is super-rehabilitated with electronic parts after a disastrous accident. The operation he undergoes gives him preternatural strength and speed, among other nice-to-have qualities. You too can be rebuilt, made better than you were. Or at least passable. How? Deep Brain Stimulation surgery (DBS).

What is DBS? It is a surgical operation that involves implanting two electrical leads deep in the brain. A battery-fueled generator is then installed in your chest to deliver a mild pulse of electricity to calm a hyperactive part of the brain.

What does DBS have to offer? Unfortunately, not the ability to run down a cheetah, or lift a car off an unfortunate pedestrian. But realistically, how often are you required to perform either of those feats? Once or twice a decade, tops. Whereas you could use a break from your symptoms daily if not hourly.

DBS can give Parkinson’s patients relief from stiffness, slowness, and tremors, increasing “on time,” time when your medication is working its best, by as much as 5 hours a day, according to the Medtronic website. It can allow reduction of the amount of medication you must take, enabling patients to function well while avoiding complications such as dyskinesia from high loads of their meds.

DBS does little for non-motor symptoms, constipation, difficulty in multi-tasking, troubles with balance, depression, etc…  although in my case, I can report sleeping better and less bladder urgency following DBS. The cost? Much less than $6 million. The price tag of surgery (including the implanted device, hospital fees and anesthesia) can range from $35,000 to $100,000. Because it has been approved by the FDA, private insurance policies and Medicare will cover some or all of the treatment costs for those who are eligible for the surgery. So, who is that?

The health website Healthline reported a 2015 study estimated that about 2% of people who qualify for the treatment actually received it. The true percentage may be higher, but larger studies are needed to confirm it. This seems like a tiny number, especially considering the benefit the procedure offers those who are highly qualified for it.

Why wouldn’t a person grasp this opportunity to enhance their quality of life? One reason is they may not be a good prospect to undergo the operation. A good candidate has a strong response to levodopa, is in good health, Parkinson’s aside, and doesn’t have dementia. According to the University of Florida, “in general, the best PD surgical candidates have idiopathic Parkinson’s (not parkinsonism which includes other diagnoses such as multiple system atrophy, progressive supranuclear palsy, Lewy body disease, corticobasal degeneration), tend to be younger (below age 69, but may be older), have a great response to medication (at least 30% improvement, but preferably higher), be medication refractory to symptoms (wearing off of medications prior to the next dose, on-off fluctuations, dyskinesias, etc.), and have no or little cognitive dysfunction. Perhaps the most controversial aspect of patient selection often involves defining unacceptable cognitive dysfunction, especially since many PD patients suffer from frontal and memory deficits, but are quite functional in their daily lives. A general rule is that PD patients with a lot of memory or cognitive problems, and those who get disoriented frequently are poor candidates and can be made worse from surgery.”

Besides not qualifying for the operation, what else might be deterring the potential numbers of those who might actually undergo it? One factor may be a simple lack of knowledge that the procedure exists. Another reason to pass up DBS: fear. Anything that starts with drilling holes in your head and attaching a heavy metal “halo” with screws to your brow is bound to be suspect; rightly so. It is, after all brain surgery, which we all know is right up there with rocket science on the difficulty scale.

There are real dangers, possibility of a brain bleed leading to a stroke from the insertion of the leads. There is also risk of an infection, which could be fatal if not recognized in time. There is the fact it plain doesn’t work for some; we don’t know why. There is the risk of speech and cognitive impairment.

Given the nature of the procedure, you should be as picky about choosing your DBS doctor as they are about choosing their patients. You want one with plenty of experience with the operation, with hundreds of successful implants, and few, if any, complications.
DBS is relatively safe when the patient has been properly screened, with brain injuries occurring in 1% of patients. When deciding whether or not to undergo the procedure the risks must be balanced against the rewards. Some things are impossible to know, the final say is up to you.

Nobody said being bionic was easy.

by Peter Dunlap-Shohl
NW Parkinson’s Blogger

“It is the work of the creative to be a prosthetic imagination for the distracted and the dull”
– Maxwell Hubert Maxwell, playwright, butterfly collector, amateur surgeon and snob.