Exploring the Adoption of Implantable Brain Stimulation into Standard of Care for Central Nervous System Disorders Proceedings of a Workshop (2024) / Chapter Skim
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3 Perspectives from Those with Lived Experiences
3 Perspectives from Those with Lived Experiences
Pages 21-30
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From page 21... ...
• One obstacle to more people getting implantable brain stimula tion to treat mental illness is the lack of qualified practitioners in many parts of the country. Many patients end up moving to areas with first-class medical facilities and doctors in order to pursue deep brain stimulation treatment.
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From page 22... ...
[The] panelists have differing neurological conditions which require unique neurostimulation solutions, but perhaps by looking across them we may find commonalities that may help advance all of them." Workshop participants explored what patients need from implantable brain simulation for it to be considered a successful treatment, discussed how adoption of the technology can affect patients and their quality of life, and finally, highlighted some of the biggest challenges to applying this technology from the patient perspective "in hopes of finding solutions and pathways forward that might enable more people to adopt this as a treatment." A DISAPPOINTING EXPERIENCE WITH THE TREATMENT OF EPILEPSY Steve Austin, a member of the board of directors of CURE Epilepsy, was diagnosed with epilepsy when he was 12.
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From page 23... ...
At first, his hands were shaking noticeably, but as soon as the current began flowing through one side of his brain, the shaking in his right hand stopped. In the video he says, "I feel like the problem which was always there is not there -- like somebody turned my right arm back on." His posture improves noticeably, and he reports to the doctor that he feels "speedy and less rigid." After the device is turned on in both sides of his brain, he can be seen jogging down the hall, taking great pleasure in an ability he had not had for many years.
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From page 24... ...
While they have remedied his tremors and dystonia, he is now taking seven pills to help control Parkinson's disease, and he has developed three categories of symptoms that he had never had, including REM sleep behavior disorder,1 a syndrome that is common among Parkinson's patients, and balance issues, which have caused him to start festinating or sometimes needing to take smaller steps backwards in order to maintain an upright and balanced position.2 Still, in spite of these new symptoms, McNasby views the procedures as a success. LIFE-CHANGING RESULTS IN TREATING DEPRESSION Jon Nelson was diagnosed with major depressive disorder (MDD)
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From page 25... ...
His depression was deemed treatment resistant. Fortunately, though, he was able to get into a clinical trial at the Icahn School of Medicine at Mount Sinai that was using DBS to treat depression.
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At some point her doctor suggested that if the medications stopped working, she could try DBS. "I was excited," she said, and willing to undergo DBS as an alternative treatment option that could help alleviate symptoms as the disease progressed.
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From page 27... ...
There was so much rigor before the surgical procedure (e.g., multilayered brain scans and robotics to ensure the exact placement of the leads) that McNasby was surprised by the trialand-error approach to adjust the electrical stimulation.
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From page 28... ...
It was extremely frustrating to get a letter from his insurance company refusing to pay for a treatment because it was "not medically necessary" when that treatment might help him not die by suicide, said Nelson. By contrast, he was treated exceptionally well by the Mount Sinai team.
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From page 29... ...
PERSPECTIVES FROM THOSE WITH LIVED EXPERIENCES 29 go to Chicago to get my care." Although she has since moved to Houston to increase her access to care, she said that "the medical system is not prepared for the amount of Parkinson's disease patients out there," including potential DBS patients." Nelson agreed and said that many patients relocate so that they can be close to doctors and clinics that know how to care for their conditions. PREPUBLICATION COPY -- Uncorrected Proofs
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PREPUBLICATION COPY -- Uncorrected Proofs
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