What to keep in mind if you’re considering deep brain stimulation
A columnist shares several tips for navigating life after DBS surgery
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.
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.
About the Author
Chris Allnutt
The column on DBS as one of the tools to deal with one of the most difficult symptoms of Parkinson’s was a good one.
Before my DBS surgery I was exhausted with my dyskinesia. The main outcome of DBS surgery was a dramatic reduction in my dyskinesia. A couple of things to be alert to—check yourself your battery monthly to ensure that it doesn’t get too low and require immediate attention. And it is not uncommon to have intense hallucinations as a (temporary) side effect of the surgery.
Tanya
Christine, thank you for your honest information. What symptoms of Parkinson has DBS help improve? How do you menage to still travel with the disease and not feel overtired. Thank you.
Christine Scheer
Hi Tanya! DBS got rid of my upper body tremor. My feet still tremor, however, that doesn’t bother me as much. My levodopa/carbidopa was reduced down to ( initially) 1/2 pill 4x a day from 12 pills a day. I don’t need the Neupro patch anymore. I sleep through the night now, and fall asleep easily. I have my appetite back. Not tremoring all the time really gave me my confidence back.
Travelling is still exhausting! I give myself a day or two to relax, get used to a new time zone, and I still nap in the afternoons! If I’m too tired to do an outing, I just say so.
I hope you are doing well.
Allan T. Jenkins
Thank you, Christine, for your just plain talk about what you encountered after your DBS. Like you, when I was first diagnosed in about 2015, I really thought that DBS would be a last-ditch effort and that surely something else would come along and be even better! Well, I'm still waiting for something else! For sure, keeping active helps a lot, for me, and I just try to keep doing what I've been doing, even though I'm typically much slower at it. And after all, I am getting older (be 71 in Nov.). I've been attending some of the on-line discussions pertaining to DBS and it might just be for me in the near future (I am about at the maximum dosage for Carb-Levodopa, which has worked well for me with little side effects, but I do get more "off" time more frequently and some of my previous foot pain has creep back into my life some nights. Your experience has certainly helped me think more about what to expect.
Denise Packer
Hi Christine. Your information couldn't have come at a better time. I was diagnosed in 2016. My symptoms have been fairly well controlled with medication but It only lasts about 3 hours . The dyskinesia and dystonia seems to be getting worse. I recently started Amantadene which has helped significantly, but the multitude of medication I take has been. causing me to be nauseated .This in turn has caused me to lose 10 lbs in the past month. How do I know if it's time for. DBS ? I exercise religiously. I love to walk but my legs feel extremely heavy and difficult to lift. Would DBS lessen these symptoms? I know I've asked you a lot of. questions, but I would like to know what to expect. Thank you ?
Christine Scheer
Hi Denise,
You need to talk to your neurologist or movement disorder specialist. DBS, like Parkinson's, is a different experience for everyone. My main symptom was tremor, but (so far) I have never had dyskinesia. I knew I was ready when I couldn't handle the tremoring, and I was sick of taking medication every two hours, and I lost somewhere around 20-25 pounds. It's a big decision. Good luck to you!
Mitchell Niese
I had bilateral CBS 16 months ago and have a 95% improvement in major tremors in right arm and leg. Its been a life changing device.
I noticed Christine is in Canada and there maybe less restrictions in the States, depending on manufacturer. I have Abbott and have had X-Rays, ultrasounds and CT scans without turning off the dbs, also no restrictions on hot tubs or electric blankets. I and others I know only had small portions of hair shaven, not the whole head. Abbott also has an app on your iPhone to control the device; so nothing new to carry around.