We are happy to share your stories with the DBS-STN community.
If you had DBS-STN surgery, or know someone who has, and would like to submit a story for inclusion on our site, please call us toll free at 1-800-579-8440 or contact us.
For the majority of those who had DBS-STN surgery, their quality of life has improved dramatically. We are pleased to present a series of reports designed from the patients' point of view.
DBS Story Archive
Looking back, I first showed motor symptoms of Parkinson's disease in late 2005-early 2006 when my right shoulder and arm started to become rigid. Soon thereafter my wife noticed that my right arm didn't swing when I walked and I noticed that I had lost most of my sense of smell. Over the next two years I developed a slight tremor in my right hand; my right quadriceps muscle began to tighten up; my handwriting became very small and doing anything, like using a computer mouse or eating with my right hand became difficult; and I began to talk in a quiet monotone.
By 2009 I knew something was wrong but didn't realize that I had Parkinson's disease. It was 2010 before I went to a Neurologist (for an unrelated and potentially more serious condition) who said "you may have Parkinson's disease" after seeing the tremor in my right arm. After another visit I was officially diagnosed with PD and was given a prescription for a dopamine agonist.
The dosage was increased slowly as the motor symptoms became more pronounced and sinemet was added and the dose slowly increased over about the next year. In late 2011, my neurologist suggested I consider Deep Brain Stimulation as I was rapidly approaching the point where the side effects of the medications (dizziness, itchy skin, insomnia, low blood pressure upon getting up) would become greater than the benefits of taking the medications.
Having never heard of DBS I learned as much as I could by talking to the Neurologist and Neurosurgeon, reading articles, and speaking with people who already had DBS. Despite the medication by early 2012 restless legs syndrome and insomnia prevented me from sleeping soundly and I felt the possible benefits of DBS were greater than the risks and contacted the Neurosurgeon's office and said: "I want to schedule the surgery."
On May 2, 2012 the leads were inserted into my brain and a week later the neurostimulator was inserted into my chest and the wires connected. The site where the head frame was screwed onto my skull above my left eyebrow hurt a lot before the local anesthetic took complete effect. However, the surgery went well and there were no complications.
The DBS was turned on May 30, 2012 and the tremors stopped within seconds. The rigidity which had nearly frozen my right shoulder was mostly gone a few days later. After seeing me without medication just prior to activating the DBS and seeing me after the DBS was turned on my wife said: "There are few true medical miracles but this is one of them."
DBS has not produced an improvement in my sense of smell which is almost completely gone and I speak a tad slowly but it has dramatically improved my quality of life. I have no tremors, 90-95% of the rigidity is gone, my legs aren't restless anymore, I've lost the Parkinson mask and can smile again, my handwriting has improved, and I can exercise almost like I used to which helps immensely.
After a year and a half DBS is still a medical miracle.