What to keep in mind if you’re considering deep brain stimulation

Note: This column describes the author’s own experiences with deep brain stimulation. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

When I was diagnosed with Parkinson’s disease in 2015, I thought deep brain stimulation (DBS) was a last resort. But once I learned more about the treatment and its potential for easing symptoms, I wanted it done, and the sooner the better. I had the surgery in 2021.

I’ve talked to a few people considering DBS over the past few years. I enjoy sharing my experience with others, mainly because it’s been a positive one.

Following are a few things to keep in mind if you’re considering deep brain stimulation for Parkinson’s.

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Mammograms

As much as I don’t like mammograms, I know they are essential in screening for breast cancer, so I make sure to have them done regularly. I go every year, but your age, health history, and other factors will determine how often you should be screened.

The first time I had a mammogram after DBS surgery, I knew I was required to turn my DBS system off. A comical situation ensued: I experienced a violent tremor while trying to hold still for the X-ray. My husband, John, helped by turning the device on and off as needed.

If you’re considering DBS, be aware that you’ll likely need to turn off the device for mammograms, and possibly for X-rays, CT scans, and diagnostic ultrasounds. Make sure to call the clinic in advance of any medical testing or procedures to explain your situation.

Travel

John and I enjoy traveling. However, all the electronic stuff included with the DBS system takes up a fair amount of room in my carry-on. It’s also important to note that you can’t go through the standard security scanner with a DBS device. It’s a pat-down for you, friend. Your provider should be able to give you some sort of document that says you have an implanted medical device. Have it ready when the security agent asks. John and I traveled earlier this year for the first time since my surgery, and though I was nervous, being prepared helped our trip go smoothly.

Hair

It may seem like a minor issue — I mean, I endured brain surgery — but the surgeon shaved my entire head. I didn’t have another option. Having no hair made me feel very vulnerable. Only now, after two years of growing out my hair, do I no longer cringe when I look in the mirror.

Be prepared that, after DBS surgery, your scalp will likely be lumpy with scars. So give your hairdresser a heads-up — no aggressive scalp massage! On my phone, I keep a picture of my head from a few days after surgery so I can show my hairdresser where the scars are.

Weight gain

It’s normal to gain weight after DBS surgery. As Parkinson’s News Today reported in 2017, after deep brain stimulation, “patients have an increased desire for food and an increase in impulsiveness, which leads to weight gain.”

To date, I’ve gained about 22 pounds. I’m certain it would be more if I didn’t exercise so much. I asked my neurologist if my weight would stop climbing at some point, and her answer was, “Maybe.” Eek.

A few other things

As Boston University Medical Campus recommends, “Use caution with hot tubs, tanning beds, and electric blankets so that they do not heat the [DBS] system and damage it.”

It can take several appointments to get the settings right. Try not to get discouraged.

Go into surgery with realistic expectations. Don’t expect a cure; you will still have Parkinson’s.

Think of DBS as another tool in your belt, not the whole belt. I still have to exercise, eat right, and maintain an excellent attitude to get through each day.

For me, DBS was a game changer. If you decide to proceed, I wish you the best.

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.