Here’s What I’ve Learned After Looking into Deep Brain Stimulation

Mary Beth Skylis avatar

by Mary Beth Skylis |

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Dad’s dyskinesia is worsening at a startling pace. When he doesn’t take his medications, he’s nearly immobile. And when he does, dyskinesia wreaks havoc on him. At a loss for options, we’ve been searching for alternative solutions to assist in the management of his PD symptoms. A procedure called deep brain stimulation (DBS) currently is one of the more effective options for patients in the late stages of PD.

Anyone who struggles with a degenerative disease can attest to the accompanying feelings of desperation. Not knowing what function the disease will steal next is nerve-wracking. Parkinson’s disease is currently incurable, but some options can help manage the disease’s progression. While weighing your options, what thoughts rise to the surface? How might undergoing DBS affect your loved ones? Could the benefits affect quality of life enough to make it worthwhile? And what kind of risks are involved?

What does DBS do?

Used for the first time in 1986, DBS primarily helps with motor symptoms, specifically severe motor fluctuations or tremor in advanced stages, according to one study’s description.

During the procedure, a surgeon places electrodes in the brain. These electrodes transmit impulses that either interrupt or change abnormal brain activity. The wires can be placed in multiple areas of the brain, which impacts the potential effects of the pulse interruptions. For example, Dad struggles most with dyskinesia and hopes to alleviate those symptoms. But if tremors are inhibiting someone, a surgeon can adjust the placement of electrodes to benefit that person’s body optimally.

A surgeon places a device that’s similar to a pacemaker under the skin beneath the collarbone. This piece of hardware transmits signals to the electrodes, allowing them to moderate adverse brain activity. The procedure generally causes minimal or no tissue damage. Ultimately, DBS is not a cure, but it can significantly impact quality of life, according to various studies and anecdotal evidence.

Is everyone a candidate?

Newly diagnosed Parkinson’s patients can’t undergo DBS. One must be a patient for four years before consideration. Ideal candidates have few other options to assist in the management of Parkinson’s symptoms. DBS candidates take medications for PD that sometimes work, but often may involve complications like dyskinesia.

Doctors diagnosed Dad in 2013, so he isn’t a new patient. He’s cognitively, emotionally, and physically strong enough to undergo the procedure. His medication works, but it causes severe dyskinesia. However, when he doesn’t take his medication, he suffers from freezing and increased mobility issues. We’ve reached a point in which Dad’s Parkinson’s symptoms are greatly impacting his quality of life. After seeing many different doctors, they’ve determined that he’d make a good candidate for DBS.

Potential benefits of DBS

According to a 2011 study by the Mayo Clinic, DBS patients often see positive results, including sometimes regaining significant mobility. “Stimulation of the ventralis intermedius nucleus of the thalamus has clearly been shown to markedly improve tremor control in patients with essential tremor and tremor related to Parkinson disease,” the study said. “Symptoms of bradykinesia, tremor, gait disturbance, and rigidity can be significantly improved in patients with Parkinson disease.”

The procedure may decrease the use of medications, although patients should work with their doctors to adjust the device’s impulses to meet each person’s unique needs.

According to a 2019 study published in the Journal of Neurosurgery that addressed long-term outcomes for DBS patients, “Tremor responded best to DBS (72.5% of patients improved), while other motor symptoms remained stable. Ability to conduct activities of daily living (ADLs) remained stable (dressing, 78% of patients; running errands, 52.5% of patients) or worsened (preparing meals, 50% of patients). Patient satisfaction, however, remained high (92.5% happy with DBS, 95% would recommend DBS, and 75% felt it provided symptom control).”

The study also observes that more than half of the Parkinson’s patients who received DBS survived for 10 years or longer. Considering that many individuals undergo DBS when alternative solutions become scant and decline becomes startling, an additional 10 years seems encouraging.

Risks associated with DBS 

Anytime surgery is involved, risk is involved, too. Some serious side effects include brain bleed, stroke, infection, or impacted memory. Also, part of the reason doctors screen potential DBS candidates for dementia and Alzheimer’s disease is to avoid worsening underlying memory problems.

As the Mayo Clinic notes, DBS is a “potentially risky procedure,” and patients should “carefully weigh the risks and potential benefits of the procedure.” Read more about possible side effects here.

Current DBS research

Some researchers are attempting to expand DBS treatment to influence freezing and balance issues. Others want to develop a smart device that sends signals when the body is particularly reactive. Some researchers are determining where and when the placement of the device is most optimal. While the best way to use DBS is still under research, clinical trials are exploring the use of DBS to manage different neurological disorders, giving hope to those who struggle with tremors, gait disturbances, and other motor-related issues. Improving outcomes for those who undergo the procedure seems inevitable, given the current interest.

Should you consider DBS?

Surgery is frightening, regardless of the positive outcome numbers. I’m terrified to think about Dad on the operating table. The decision to undergo surgery is never easy, and everyone’s situation is different. Knowledge is the best weapon against degenerative disease. Weigh the potential good and bad impacts it may have. Ultimately, only your medical team and you can determine whether DBS is a good option for you.

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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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Gary Chiljean avatar

Gary Chiljean

Hi Mary, Thank you for the very informative article re DBS. Sorry, to hear that your Dad’s conditions have worsened. I have PD as well, and I feel my own conditions have worsened too. With me, it's FOG, or freezing of gait. I just get stuck and can't move, sometimes for as much as 5 minutes. I was told by my doctor that I'm not a candidate for the DBS, but now I'm beginning to realize that I just might be. So I will be looking into it. Thanks again.

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Ann Perkins avatar

Ann Perkins

I finally had DBS surgery almost 3 years ago. It was worth every test I went through, every wait, every scar (which are now hidden under my long hair). I wonder if the reason why you were declined was due to the FOG issue. Perhaps you expected that to be gone after DBS? I can safely say now, that when I had DBS (17 years post diagnosis), I didn't expect anything but my tremors to be helped. Much to my surprise, my anxiety levels dropped, my dexterity improved, and my typing and driving skills were back to normal, plus I can now even watch a scary movie and not experience tremors.

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Joella Jacobson avatar

Joella Jacobson

Thank you for answering all the lingering concerns I had regarding surgery. My first appt is scheduled for
9-18-19 at OHSU with the MDS.

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Susanne & Lars Thomsen avatar

Susanne & Lars Thomsen

My husband had DBS in 2007 after his doctor for at least had recommended it. He went through lots of tests before the procedure. He had so much dyskinesia that he lost a lot of weight. He now has dyskinesia but not nearly as much as he had in 2007. He has now had Parkinsons for more than 25 years. He is still walking, albeit with a walker. He does have both freezing of gait and dyskinesia. He does get Physical Therapy and Speech Therapy but this keeps him going. We try to get out almost every day, not so much for exercise but to stimulate his brain. The DBS was a lifesaver. He has had the batteries changed a few times. Last time he got rechargeable batteries, since we were concerned about the anestesia in connection with the battery changes. These batteries are supposed to last 9 years. All in all we have been very pleased with the result. And I do believe the operation has advanced considerably since 2007. He is now turning 75 and is in fairly good health.

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Joella Jacobson avatar

Joella Jacobson

Thanks so much for your in depth detailed comment. It helps so much!

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Amanda Molina avatar

Amanda Molina

Would you have a second surgery to address the other side if symptoms were a problem at age 77.

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Nancy Garcia avatar

Nancy Garcia

Nice summary; there are additional educational resources on the website of the International Neuromodulation Society. A fact sheet on Parkinson's disease, for instance, also has links to fact sheets about DBS therapy.

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Alex Abrahams avatar

Alex Abrahams

i WAS DXD 16 YEARS AGO, HAD BILATERAL DBS 4 YEARS AGO.NOW I AM 59. WHEN THEY TURNED ME ON I WENT FROM SHAKING TO CALM SHAKING TO CALM. IT'S SO NICE I SAY IT TWICE. i BELIEVE THAT THE SUCCESS OF THE PROCEDURE IS DIRECTLY RELATED TO THE EXPERIENCE OF THE NEUROSURGEON. wHEN I FINALLY MET WITH MY SURGEON DR. BRIAN KOPELL AT MT. SIANI HOSPITAL NEW YORK CITY, HE ASKED IF I HAD ANY QUESTIONS FOR HIM? I HAD JUST ONE. HOW MANY OF THESE HAVE YOU DONE? AT THE TIME IT WAS OVER 900. NOW HE HAS OVER 1500. A PWP SHOULD SHOP SURGEONS LIKE THEIR LIFE DEPENDED ON IT YOU KNOW ITS NOT ROCKET SCIENCE IT IS BRAIN SURGERY.

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Kevin bromley avatar

Kevin bromley

Hi everyone... I'm in a dilemma as to have the DBS operation or not...
I live in the UK and have had PD over 15 years and I'm 58...
My PD consultant has recommended me to explore the option of having the surgery, but unlike most fellow PD sufferers I don't suffer tremor I have the rigidity symptoms...
Although my drug regime seems to get me by, I'm now aware things are moving on and the bad days are catching up with my good ones...
I've been looking into the DBS treament and I know a friend of mine has had the opp but although it brought a stroke on he would go for it again...
He however is a tremor suffer...
Does anyone know of anybody who suffers from my form of the disease and who has had the DBS operation...
I would be interested in thier thoughts and results of the opp ...

Regards
Kevin

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Breege ginty avatar

Breege ginty

My brother has Parkinson’s for the last 6 years l wud like to know if this procedure is done in lreland as it wud help him a lot

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