DBS Outcomes – Advocating for better care.

In review of my DBS blog created 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 450 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?  A person submitted a story about experiencing worsening speech and gait problems after DBS. I could read in her words a palpable distress of lost hope. Although DBS is a highly beneficial treatment, as a leader in DBS programming, there is an obligation to shed light on a persistent problem for patients with DBS that may 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.

Deep Brain Stimulation Problems & Failures

Deep Brain Stimulation Problems & DBS Failures     Download Post

MANAGING DBS PROBLEMS & FAILURES AFTER DEEP BRAIN STIMULATION SURGERY

Sierra Farris, MA, MPAS, PA-C

Deep brain stimulation (DBS) is a surgical treatment for movement problems associated with Parkinson’s disease, tremor or dystonia. DBS is very effective in controlling many symptoms related to abnormal movement; however dissatisfaction with the therapy can occur at any time after surgery. Expectations for DBS are generally high as is the risks of having brain surgery. Expectations beyond what the therapy can provide are a high source of patient and family dissatisfaction. Adequate pre-surgical counseling is a key step in assuring you and your patient are in agreement about the expected benefit and risks associated with DBS.

When and where to pursue DBS Troubleshooting

Common causes of DBS failures, problems or dissatisfaction:

  • Inadequate or inappropriate adjustment to stimulation
  • Disease progression
  • Damaged DBS hardware or depleted battery
  • Inadequate placement of the implanted electrodes
  • Inadequate medications or expectations
  • Inappropriate diagnosis
  • DBS done too late to achieve optimal benefit

Our DBS Troubleshooting Clinic is a unique multi-day clinic for individuals with DBS seeking a second opinion about programming, determining adequate medication dosing and/or to investigate problems from stimulation or the hardware. Multiple visits with our team may be required to complete the assessment. All visits are tailored to each individual to investigate the cause(s) of dissatisfaction or ineffectiveness of DBS. 

We summarized the results from 50 people seen for troubleshooting below.

Problems ranged (in order of prevalence) from walking/balance, Off time, falls, speech, tremor dyskinesia and no improvement were the most common reasons for troubleshooting. These symptoms are commonly associated with disease progression and may not be investigated after DBS. We have learned from our troubleshooting experience that many symptoms that worsen after DBS can still be improved with careful and meticulous evaluation of the variables that can lead to worsening symptoms. Dr. Monique Giroux and Sierra Farris work together to find solutions to the many problems that can occur months to years after DBS surgery. Some patients will see a physical therapist or speech therapist to help fine tune the stimulation settings for optimal benefit.

Symptoms commonly associated with disease progression can be improved with therapeutic stimulation settings such as speech, walking, stiffness, slowness tremor and balance. Some people did not experience an improvement in symptoms including gait freezing, falls and balance, however, what is obvious in our results is sub-optimal stimulation settings can definitely worsen a person’s symptoms. Some of the patients in this series had DBS for over 5 years but were still improved with reprogramming. We feel that patients should have a thorough evaluation for worsening symptoms no matter how long they have had DBS.

We also believe patients should have confidence that the DBS is working as well as possible to be free of the concerns and stress that can accompany uncertainty. We include an evaluation and discussion about what should be expected from DBS and review the steps if DBS is not performing as expected. Our troubleshooting evaluation includes a medical consultation and structured DBS programming strategies to optimize benefit while avoiding or eliminating stimulation side effects. Surgical consultation is coordinated if indicated.

Read about three incredible individuals living with Parkinson’s disease that were seen in our troubleshooting clinic. Each was determined to find solutions for their unsuccessful DBS surgery and disability from stimulation side effects. You will read about amazing recoveries after proper programming and a new lease on life after revision surgery. Meet Charlene. Meet Dean. Meet Bill.

A pre-appointment consultation is available to patients who would like to discuss their concerns prior to setting up appointments for DBS troubleshooting. Call Celina Romero at 303-781-0511 for special instructions. We require brain imaging and surgical reports prior to scheduling to make sure we optimize Sierra’s time with you during the appointments. Average length of evaluation is 3 days. We have served many patients that live out of state. Learn more about our Comprehensive DBS Services or Sierra Farris, PA-C.