Deep Brain Stimulation - How did I decide? (#2 in series)
Updated: Feb 12
10 years ago, when I barely knew what Parkinson's disease even was, if you told me I would decide to have an elective brain surgery, I would have said you were crazy!
Yet, here I am ... in just a few weeks, I will undergo the first of two surgeries to begin treating my Parkinson's (PD) with Deep Brain Stimulation (DBS) in addition to my medications. I have never had a surgery (I have had wisdom teeth pulled, but never under anesthesia). The closest I have been to being under is when I had my first colonoscopy at age 50. This is not a simple decision, I spent years coming to this conclusion. I cannot begin to fully explain how to decide to take this route to someone else. I only share my story as potential input and knowledge for others considering the surgery or wanting to understand it better for their own benefit.
What makes a good DBS candidate?
From what I have researched and experienced, likely the number one quality that makes a good DBS candidate is how well you respond to Levodopa (L-dopa) as a method to control your PD symptoms. If L-dopa does not significantly help you manage your daily life, it is unlikely DBS will either. Simply put, DBS is a partial replacement (in some cases a full replacement) for the L-dopa in your daily routine.
Additionally, you need to be fortunate to have not experienced cognitive loss beyond what is normal for your age. DBS surgery carries risk. The risk/reward analysis is not worth it if you already have cognitive decline associated with your PD.
Your physical make up needs to allow for the safe placement of the leads in your brain. Some people are not able to undergo the surgery because the pathway that needs to be used for placement of the leads has some obstacle (blood vessel, e.g,) that precludes a safe surgery. Remember, it IS brain surgery, unnecessary risks are not worth it.
What can you expect from DBS?
Most importantly, you cannot expect DBS to act as a cure for PD. Your symptoms will not be eliminated for the rest of your life. You will likely need to continue your medication regimen, although likely at a lower dose. Expectations are important ... realistically understanding what DBS can and cannot do is very important, in my opinion.
One of the biggest drawbacks from L-dopa treatment is maintaining a therapeutic level of the drug in your system consistently throughout the day. There have been many improvements in recent years, but the reality of needing L-dopa in your system is the management of "on" and "off" times during the day as the level of L-dopa fluctuates. The brain reacts similarly to DBS as it does to L-dopa, so DBS can provide a baseline impact to your symptoms consistently throughout the day.
While some people are able to completely eliminate L-dopa from their drug regimen for quite some time after DBS, most are able to significantly reduce their L-dopa from pre-DBS levels. Said another way, symptoms that respond well to L-dopa will likely reduce from a person's pre-surgery off state. In many cases, people don't return to their pre-surgery levels of L-dopa for a decade or more (remember, PD is always progressing, it is natural to need more treatment in terms of medication or more stimulation over time).
If you experience a symptom that doesn't reduce from taking L-dopa, it is not likely at all that they symptom will reduce from DBS.
Why did I decide to try DBS?
First off, I am lucky that my symptoms are not debilitating for large portions of my day. People who see me when my medication is "on" often don't think I have Parkinson's. L-dopa does a good job of helping me lead an active and productive daily life. From early in my diagnosis, multiple Movement Disorder Specialists have told me that I would likely benefit from DBS in my future. So I have had many years to think about this and get comfortable with the idea. It is not like I heard about this option a few months ago and decided to give it a shot ... I have been coming to terms with this for at least 7 or 8 years.
Second, in order for me to manage my daily symptoms, I take a lot more L-dopa than I did 7 or 8 years ago. I went from taking one pill 3 times a day with not much concern of how exact my timing was between doses, to taking 2 pills every 3 hours from 7AM to 7PM relying on an alarm to ensure I hit the 3 hour space between doses.
I used to not be able to relate to those I knew living with PD who would say "it's about time for my next dose, I can feel the symptoms coming on". Now, I am the one saying it! I know people who struggle far worse than me managing their off time (the time when L-dopa is too low to be effective in managing symptoms well), but I am at the point where I can tell it is just a matter of time before it gets unmanageable for me. With decades more of life ahead of me, I really don't want to be taking my meds more frequently than 3 hours ... the limit is somewhere near 2 hours between doses.
During my time coming to terms with this, my wife and I talked a lot about hitting the "window" ... what we called the time between it being too early to get DBS and symptoms becoming unmanageable. Our thought was that we didn't want to have to rely on DBS to "get us out of the hole", but use it as a tool to keep my symptoms manageable and give me some relief from having to take so much medication.
A big part of this decision is the significant increase in my foot dystonia, especially when I first wake up in the morning. Currently, I take my first L-dopa of the day while I am still in bed. I try to take it 30 minutes or so before I want to get out of bed. This is an attempt to let the meds kick in before I try to walk. Most often, this doesn't get me all the way there.
My feet curl under with a severity that is impossible to describe to someone who hasn't felt it. It is impossible for me to uncurl them and it is extremely painful to try to walk on them. When taking meds well before trying to walk doesn't work, I put on knee pads and crawl on all fours to get to the bathroom. Sometimes, it is not too bad. Sometimes, it is nearly impossible to get myself onto the toilet. Humbling is not a strong enough word to describe the feeling of helplessness.
(Me trying to walk while my dystonia is in full gear. This was before I adopted the knee pad method)
There is no guarantee that DBS will help my dystonia. However, there is a good chance it will and knowing there is something I can do to help manage this by giving me a stronger baseline of treatment to begin each day with is worth the risk of the surgery.
I often say in jest ... my dystonia is challenging enough for me to willingly ask someone to drill holes in my head!
After thinking about this for years, discussing it with my wife for years and talking with Movement Disorder Specialists & neuro surgeons, we believe our window for optimum timing for DBS is open.
I don't mean to diminish the risks, they are very real. I have thought long and hard about them. I know people who have had bad experiences, including having their system removed. It is a serious surgery and is not for everyone. That said, it does have a good track record of helping people manage this currently incurable disease. The risks are worth the potential reward in my calculus.
I often describe PD as wanting to take control away from you. If I can take a positive step toward regaining a little control over PD for possibly a decade or more ... that is a step I am willing to make. So, going back 10 years, now I think I could convince pre-PD me that I am not crazy to have brain surgery!