Since I created this blog in May 2013, the most common search that brings someone to the blog include speech and walking problems. My August 2013 post titled “Walking and balance is worse after DBS, What can be done” has been read over 2,000 times. Speech and balance problems also reflect the most common concerns from patients that have requested a second opinion for our DBS troubleshooting clinic.
Over the past 12 years, we have evaluated over 350 people seeking a second opinion about poor results. Patients arrive with the hope we will find a solution and feel the second or third opinion is their last hope. Investigating problems takes time and patience with a methodical approach. Insurance payers do not reimburse extended clinical assessments so the extra time is generally at our willingness to work pro bono. Most often, the ‘fix’ is a simple change in stimulation settings. Sometimes the placement of the probes in the brain could be better, and sometimes, the problem is disease progression. Broken wires and device malfunction have become less common over the past decade. Managing stimulation appropriately remains a predominate cause of poor results, even after all the years DBS has been FDA approved (1997).
Not all communities will have medical specialists to help when results are disappointing and professional politics or egos may limit referrals for second opinions. The majority of our calls for a second opinion are from patients or family members seeking out help on their own. So where can a patient turn for help when symptoms do not improve as expected or the results do not match the proposed benefits of DBS? My Story #3 was submitted by a person experiencing worsening speech and gait problems after DBS. I could read in her words a palpable distress of lost hope. Thus my purpose in writing this post is not to increase my pro bono time but to shed light on a persistent problem for patients with DBS that have nowhere to turn.
As medical providers, we should not underestimate the negative impact , the loss and the persistent distress when DBS falls short of the promise that life will get better. When DBS fails the patient, the cause should be identified and quality improvement should be implemented to raise the bar of care for patients with DBS. We owe our patients the level of care they deserve when undergoing the risk of an elective brain procedure. We have an ethical responsibility to not engage in offering DBS to patients when neurological, surgical and/or programming skills are limited.
I am often asked how to find a qualified DBS programmer and many of the patients seen for troubleshooting leave with an anxiety of what will happen when they return home. Unfortunately, there is no registry, certification or qualification for DBS programmers. The credentials vary and level of education nor years of experience guarantee competence in DBS. Stimulation may even be managed by device industry and non-medical personnel. This has been an ongoing issue since DBS was FDA approved and remains a quandary for patients, training programs and the healthcare system.
We are only seeing the tip of the iceberg as DBS is mentioned in the media as a hope for Alzheimer’s, Autism, stoke and depression as well as several other serious debilitating conditions. When time, research, medical training, experience and increasing volumes of implants have not led to a proficiency examination nor standard of care policy for DBS, the true benefits of deep brain stimulation will remain elusive for many patients and the number of poor outcomes is destined to grow.