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
https://parkinsonswomen.com/2016/06/28/dissatisfied-with-your-dbs/
No comments:
Post a Comment