In the large number of Deep Brain Stimulation (DBS) surgeries performed—135,000 reported by Medtronic  in 2015—dissatisfaction with this surgical treatment for Parkinson’s disease can sometimes occur. If you have DBS and you aren’t satisfied with it, try to put your worry aside so you can focus on fixing it!

Two clinics dedicated to DBS troubleshooting offer useful information on their websites:

University of Florida DBS Troubleshooting and DBS Failures Clinic 

The University of Florida Center for Movement Disorder and Neurorestoration has a DBS Troubleshooting and DBS Failures Clinic. The clinic offers its services to patients from all over the United States and also to international patients– and to date has evaluated over 500 deep brain stimulation leads and has re-operated and re-programmed dozens of patients.

The clinic website explains step-by-step how a second opinion is provided, and lists selected UF Center publications on DBS failures and DBS troubleshooting. The clinic is co-directed by Michael S. Okun, and Christopher W. Hess, MD. Okun is the Administrative Director and Co-director of the Center for Movement Disorders and Neurorestoration. He has researched and written extensively about DBS, both in his affiliation at UF and in his role as the National Medical Director for the National Parkinson Foundation since his appointment in 2006. Christopher W. Hess, MD, is Assistant Professor of Neurology at the University of Florida College of Medicine and he directs the Veterans Administration Parkinson’s Disease Consortium Center at the North Florida/South Georgia VA Medical Center.

Movement & Neuroperformance Center of Colorado DBS Troubleshooting Clinic

The Movement & Neuroperformance Center of Colorado has a comprehensive DBS medical clinic in Denver Colorado. Co-founders Dr. Monique Giroux, Medical Director and CEO, and Sierra Farris PA-C, Director Deep Brain Stimulation Services work with a team of specialists on DBS troubleshooting. Farris also authors  Deep Brain Stimulation Insights, an insightful website on DBS problem solving. Farris has investigated 300 cases of DBS dissatisfaction.

On the Brain Stimulation Insights website, there’s a section on troubleshooting problems by Farris and Giroux that includes a study-based breakdown of the factors that lead to dissatisfaction with DBS. The primary factors include:

  • suboptimal stimulation settings
  • disease progression
  • inappropriate patient selection
  • hardware damage
  • lead malposition

When you’re deciding what is wrong, you’ll want to review these factors as they apply to your own history. Farris writes, “Seeking help from a highly experienced DBS expert team is encouraged if DBS isn’t working as expected, especially if revision surgery is planned.”

Get a second opinion

Check out the top hospitals in your area and consider asking a neurosurgeon and a movement disorder specialist at one of them for a second opinion. They will need all of the actual imaging (CDs of MRIs, CTs), and neurologist programming information to access your case. A second opinion brings you peace of mind to know that you’ve double-checked your situation.

Keep a positive outlook

Sometimes it is hard to look at your own attitude towards PD and DBS, but try to be honest with yourself. Are you a glass-half-empty type of person? Negativity and bad attitude will not do for you as you try to improve your DBS. Now is the time to have faith in yourself, and your medical team. Your DBS will get better. There are clinics and doctors out there dedicated to making your DBS work. You need to be positive, patient, steadfast, and dedicated to finding the answers that work for you. You can do it.

About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen

4 thoughts on “Dissatisfied with Your DBS?

  1. What about patients with Cervical Dystonia that had the DBS and aren’t getting any better? I had mine a little over a year ago and it appears it hasn’t done anything for me. I was so hoping for great results from it. What can I do about it?

    • Gladys, This website focuses on Parkinson’s disease, but I’d recommend that you get a second opinion on your DBS for your medical situation. There is much that they can do to fix DBS outcomes with programming. Maybe a different program could help.

  2. Reblogged this on defeatPARKINSONS and commented:
    thanks Darcy…the biggest problem I encounter with DBS unsatisfaction aside from not being right candidate is poor programming. Best to get programmer that is also movement disorder and one with lots of experience. Like everything in life experience matters..

  3. Good news indeed for the PD/DBS community, and about time too!I don’t agree that ‘grin and bear it’ is the patient’s onus, so I’m happy to see some known professionals in there cleaning up the mess.
    Many thanks Darcy!

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