Since 2008, I have been a left-side-only, tremor-predominant, female diagnosed with Parkinson’s Disease. I had Deep Brain Stimulation (DBS) in 2013 to deal with the tremor on my left side. The surgery performed by the neurosurgical team at Kaiser Permanente Redwood City stopped my left-sided tremor completely. Two years and nine months later, I am still tremor free on the left side. I take no medications for tremor, and I am able to work full-time with full use of my left hand. I feel very lucky.
During my DBS procedure a very slender metal electrode was inserted into a certain part of the brain and connected to a computerized pulse generator, which was implanted under the skin in the chest (similar to a pacemaker).
Prior to surgery, my doctors and I had to choose whether to address the tremor on one side (unilateral) of my brain or both sides of my brain (bilateral.) I chose surgery on my left side only because I was not experiencing any symptoms on my right side. Since there is risk with all steps of brain surgery, I saw no reason to have speculative surgery on the side with no tremor.
Almost three years later, I am beginning to notice a tremor developing on my right side. This feels like a bad roll of the dice for me. My hope is that the right side will remain a minor tremor and that I will be able to live with it, as is. In the worst scenario, it will become debilitating and I will have to decide on whether to have more surgery.
I asked my neurosurgeon, Mark Sedrak if he would offer some pointers on the decision-making. He said, “I see going to surgery to be a similar decision as going to war. In every instance, a risk benefit analysis needs to be carefully weighed. For some patients with akinetic rigid symptoms of PD, bilateral dbs is inevitable. For patients with tremor dominant PD, it depends on how impactful the tremor may be on your daily life. If it’s very minor, it’s probably not worth it. If major, it may be considered. Quality of life versus risk is what you’d need to weigh. Although the risk of surgery is small, it’s obviously never zero.”
Prospective patients making the decision between unilateral or bilateral prior to surgery may wish—as I did—for a statistical formula to help their decision. There isn’t a wealth of easy-to-read research available and since every case is individual, you need to talk with your doctor about your specific concerns.
In 2013, authors Raja Mehanna and Eugene C Lai wrote in a study titled “Deep brain stimulation in Parkinson’s disease,”that “The decision to implant unilaterally or bilaterally needs to be tailored to the patient’s needs.” 1
In 2010, authors Kelly D Foote and Michael S Okun reported in “PD DBS: what when, who and why? The time has come to tailor DBS targets,” a study on 44 patients, that “21 of them (47%) remained unilateral and the most common reason for adding second–sided DBS was inadequacy in addressing motor symptoms. Those who chose a second lead had significantly higher baseline motor scores and significantly lower asymmetric index (meaning their symptoms were rates closer to equal on both sides of the body.)” 2
If you’re deciding on unilateral versus bilateral DBS, here are some terms to learn for your own risk benefit analysis:
- baseline asymmetry (motor rates that aren’t equal on both sides of the body)
- akinetic rigid symptoms (slowness of movement, muscle stiffness, and resistance to passive movement)
- baseline motor score (an assessment your doctor makes about your motor skills)
- tremor-predominant PD (when tremor is your main problem in PD)
Going to war for DBS isn’t something I look forward to when my brain is the territory. However, I’m glad I had DBS in 2013. Without my surgery then, I would have stopped work, cancelled travel, and suffered without quality of life.
As the British philosopher Bertrand Russell said, “War does not determine who is right–only who is left.”
1 Deep brain stimulation in Parkinson’s disease, Raja Mehanna and Eugene C Lai © 2013 Mehanna and Lai; licensee BioMed Central Ltd., http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4177536/
2 Parkinson’s disease DBS: what, when, who and why? The time has come to tailor DBS targets, Michael S Okun, and Kelly D Foote, University of Florida Movement Disorders Center, McKnight Brain Institute, Gainesville, FL, USA http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076937/
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