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Deep Brain Stimulation and Brian Yundt’s Story

Deep Brain Stimulation (DBS) is an invasive surgery for individuals with various neurological disorders usually in relation to movement. These symptoms, such as essential tremor, varying Parkinson’s disease (PD) induced symptoms and dystonia have been treated over 160,000 times to date. The typical procedure involves implanting an electrode into the target region of the brain most effective at reducing the symptoms of that individual. This electrode is then connected to a pacemaker-like generator which rests in the upper chest, just underneath the collarbone of the patient. The generator can then be controlled in different ways (usually via Bluetooth) with a remote device which the individual can carry with them. For individuals with Parkinson’s disease, this surgery is commonly utilized when medications are no longer effective to maintain good quality of life and result in polarized swings between their “On” and “Off” states.

Brian Yundt, now 45, was diagnosed with early-onset PD five years ago. Up until this August, he had been declining quite significantly. His quality of life seemed to be dissipating rapidly as his symptoms of dystonia and bradykinesia (slowed movement) without medication were severe. Brian was having to wake up hours before work in the morning to stretch and be ready. While he was able to function with the medication, he would struggle with dyskinesia (excessive movement from the medication) and random bouts of dystonia quite often. If he missed his pill time by five minutes the dystonia would return almost immediately. There were many times when he would be driving and would have to pull over to the side of the road as his leg began to cramp. He was unable to effectively press the gas or brake pedal. As his response to the medication was also waning (he gradually went from one pill every four hours to one pill every hour), he was open to any potential treatments to hopefully retain even a fraction of the quality of life he had before PD.

PD-induced symptoms such as tremor, rigidity, stiffness, dystonia and bradykinesia are reduced by disrupting abnormal electrical signals by activating the electrode implanted in the DBS procedure. This treatment is very flexible. Electrodes can be placed on one side or both sides of the brain. The generator in the chest can then be adjusted and programmed to the frequency most effective at reducing PD symptoms while minimizing potential side effects. Just like any other surgery, DBS carries a low risk of complications. Nevertheless, a joint decision should always be made by patients and their doctors regarding whether to undergo the surgery, as different individuals have different levels of susceptibility to complications or side effects. This causes certain eligibility criteria for receiving DBS. For example, someone with evident cognitive decline (another potential symptom of PD) may not be eligible for DBS, as there is a potential for the surgery to result in further cognitive decline. Therefore, it may not be worth the risk. These decisions are made in collaboration with the neurologist, psychiatrist and neurosurgeon as to whether DBS is the best option. Once a joint decision is made to undergo the surgery, the patient may first go through a neuroimaging scan (MRI or CT) to map the patient’s brain and identify the optimal region where to place the electrodes. Patients are also observed when they are completely off medication to see the full extent of their PD symptoms.

Brian has been healthy and active throughout life and he had no cognitive decline throughout his five years with PD. After completing cognitive and psychological tests and the physical test when he was completely off medication, it was determined that he met all the criteria for being a good candidate to receive DBS. He specifically recalls how tough it was being off medication: “I couldn’t even walk, they had to push me in a wheelchair. I was cramping everywhere (dystonia) and was sweating … It was terrible.”

During the surgery, the patient is injected with a local anesthesia in the scalp. There are no pain receptors in the brain once past the scalp, so any implants or insertions of electrodes into the brain are painless. This allows for surgeons to actively test the effectiveness of the electrodes and have the patient actively respond. In other cases, a general anesthesia will be used, causing the patient to be fully unconscious. In the second portion of the surgery, the pacemakerlike generator will be placed under the skin in the chest.

On the day of the surgery, Brian had to be completely off medication. This is necessary so the surgeons can ensure that the electrodes are working and that an improvement in symptoms, or the degree of effectiveness, is not caused by medication. He was awake and responsive for the procedure as the surgeons implanted the electrodes into the optimal positions. He remembers being told not to talk as his speech was activating neurons in his brain and distorting the signals the surgeons were analyzing to test the effectiveness of the electrodes in the positions in which they placed them. The generator in his chest connects to his phone using Bluetooth and he can now easily adjust the electrode stimulation levels if needed.

Having a realistic expectation of the surgery is important when deciding whether to undergo the surgery. While deep brain stimulation doesn’t cure Parkinson’s disease, it can help lessen symptoms tremendously. The improvement of symptoms depends on individuals, so it is necessary for patients to discuss with their care team the expectations for the surgery.

Brian is practically a best-case scenario, but his experience exemplifies the life-changing potential DBS has. Before the surgery, he didn’t know what his future would be for his career or how his life would be with his wife. He was having to live on a day-to-day basis, as his dystonia controlled his life and prevented him from making simple plans for the next week or even the next day. Now, after the surgery on August 23, 2021 and his final programming session in November (to optimize the generator and level of electrode stimulation), his life is completely back to normal. His dystonia, bradykinesia and dyskinesia are all gone and there are no swings of mobility or unpredictable cramping throughout his day-to-day life. He can workout again and go out to dinner with his wife confidently and with no anxiety. As December approaches, he is on the verge of returning to his job as a manager for building inspectors. While he doesn’t know what will happen years down the road, right now his life has been restored to a degree to which he would have never thought possible six months ago. While he is aware that DBS might not be effective for everyone, he still wants people with PD who may be eligible for the surgery to be aware of it and consider its potential. It has completely changed his life and it certainly has the potential to change others as well.

A special thanks to Brian for taking the time to talk about his experiences with Parkinson’s, his DBS surgery and how his life has changed since.

Written by:

Yunyi Yan is a third-year Kinesiology and Psychology double-major student. She is passionate about neurological disorders and hopes her work can help people.

Simon Hawke is from Vancouver, B.C. He is currently in his third year at Western University studying neuroscience and is interested in researching neurodegenerative diseases.