What’s it like to get DBS surgery?

In December 2018, I had Deep Brain Stimulation surgery to alleviate symptoms of Parkinson’s disease. It was quite the experience, and my family and friends were in awe, not only of how I handled it but also of the transformation afterward. I would like to take you through a timeline of my surgery so you can get an idea of the process. This was done at the AMC hospital in Amsterdam, so your experience will vary.

September – three months before the surgery

I went into the hospital to have an evaluation. The questions to be answered were, am I healthy enough for DBS surgery, and will I benefit from the surgery. This was a two-day experience and I had to stay at the DBS Center overnight. I was lucky enough to have my own room, but many people had to share rooms with others. During these two days, I had:

• A cognitive test, testing my logic, memory, and spatial abilities through a variety of written tests. Some people who go through DBS lose some cognitive ability, so they wanted to make sure my cognition could take the IQ hit.
• A psychiatric test, testing to see if I was sane enough to go through DBS. The reasoning here is that some people go through behavioral changes after surgery – similar to the effects of dopamine agonists. They wanted to make sure I wasn’t suffering from severe depression, which could also increase after surgery.
• A physical test, testing my OFF neurological exam to an ON exam. They want to see just how well carbidopa/levodopa worked on me since this would be an indicator of just how well the surgery would improve my symptoms.
• A visit with the cardiologist to see if my heart was healthy enough for surgery. They took an ECG and reviewed my heart medications. They gave these results to the anesthesiologist for the final test…
• A visit with the anesthesiologist, to see if I was healthy enough for full anesthesia.

About a week after these evaluations, I got the call that I had been accepted. The next step was to meet with the surgeon.

Late September – about two and half months before surgery

I went back to the hospital to meet with the person who would be performing the actual surgery. This was a meeting in his office, and he explained to me every step of the surgery. I was already aware of the entire procedure since I had read a fantastic book about it. This was also the time to make a decision on the tech and procedures to be used.

The hospital had pioneered a new method of performing the fully asleep DBS, and their own research had shown that it was just as effective in placing the leads as awake DBS. I, of course, opted to be asleep. Next, I had to choose the technology. They could implant all three brands of stimulators (Medtronic, St. Jude, and Boston Scientific), and they recommended the Boston Scientific since this is what they have had the most success with. I agreed and went for the Boston unit (which also has new steering technology to help avoid problem areas in the brain when programming).

Finally, the stimulator – would it be the non-rechargeable battery that needed to be changed every couple of years or the rechargeable one with a potential 25-year lifespan. I was used to charging my phone every night, so I knew I would never forget to “charge myself”, so I went with the rechargeable battery pack.

In October, I received a call from the DBS Center.

My surgery would be on December 6th. I was so excited! I would finally have some relief from this relentless illness. I booked flights for my family and bought a couple of blow-up mattresses.

With just a couple of days until surgery, the hospital called me to confirm my surgery and told me what to take and what not to take of my medications. I should not take any Parkinson’s meds, but I should take everything else.

December 5th – the day before surgery

I arrived at the DBS Center in the afternoon with my family, and I was immediately assigned a room. Again, I had the good fortune of not having to share a room with someone else. The next several hours consisted of various checks, essentially checking my vitals to make sure I was on track for surgery. It felt like the countdown to a rocket liftoff! My family stayed until closing time (around 6pm), at which point I had to fight to not have the catheter inserted that night while I was awake. This is what scared me the most, to be perfectly honest, and I convinced the nurses to insert it when I was asleep right before surgery. I had dinner, watched some television, then texted with my wife and went to sleep.

December 6th – the day of surgery.

I was up by 6am, and my family arrived at around 7am. I took my heart medications, and then it was time to roll me into surgery. I said goodbye to my family and several nurses rolled me down a floor to surgery prep. I met the anesthesiologist and surgery nurse, as they prepped me for surgery. I was lying down when I rolled into the operating room. About a dozen people were there, each prepping their respective areas. I saw the surgeon, who asked me to verify my name and what I was there for. I said, “My name is Nick, and I’m here to get some holes in my head!”. Everyone laughed as they continued prepping.

Finally, the anesthesia mask went on my face, and they told me to breathe normally. The mask made breathing a little difficult, maybe I was starting to panic or maybe it really was hard to breathe in the mask. None of that mattered though since a minute later I was out like a light.

December 6th, later that afternoon

I woke up disoriented in the recovery room, where a nurse was doing something similar to what was happening before surgery. I wondered out loud, “where am I?” and “did they do it?” I honestly cannot remember a moment of the actual surgery and wondered if it really happened. After about 30 minutes I was rolled back into the bedroom, where my family was waiting for me. My doubts persisted in a medicated haze, and I asked them all if it was really done. I emphasize this part because the surgery itself is the scariest part for most people, but it was like a blip in my consciousness and I don’t remember a thing.

During surgery, the doctors had implanted a lead in each side of my brain (called a bilateral STN surgery), and a stimulator was implanted in my chest. The wires in my brain were routed down my neck and plugged into the stimulator (which is on the right side, in case I need a pacemaker someday in the future).

December 6th, later that night

My family realized I was completely out of it from anesthesia and from all of the medications they must have given me, so they let me rest and sleep the rest of the day. That night, the painkillers began wearing off, and I could feel the discomfort of the wounds on my head. I could not sleep at all that night, partially because of the discomfort, and partially because I couldn’t get comfortable. I tried to sleep as much as I could, but probably only slept for an hour intermittently. I watched television instead. The nurses would come in every couple of hours to check on me, and at around 6am, someone came to remove the catheter. Surprisingly, it didn’t even hurt… I was probably scared for no reason.

December 7th – the morning after

My family was back by my side and I was fully awake and ready to go home. I ate breakfast and by noon I was discharged from the hospital. The nurse offered me opioid-based painkillers, and I refused and said I would stick to Paracetamol (Europe’s Acetametaphine, Tylenol). As soon as I got home, I could begin feeling the surgery incisions and so I took two Paracetamols and fell asleep. I continued taking two Paracetamols every 4-6 hours and going back to sleep for the next couple of days. I just could not keep my eyes open. I wasn’t in pain, but rather I had discomfort from the under-skin routing of the cables and from the chest implant. Over the following days after surgery, I would develop black, swollen eyes. The painkillers kept the pain at bay, but I looked monstrous.

Mid-December – the honeymoon period

Most patients who go through DBS note a period after surgery of about 7-10 days in which your brain is producing more dopamine and/or healing from the trauma of brain surgery (likely both are true, but no one knows for sure), and you are feeling great – almost Parkinson’s-free. I definitely felt this, and it lasted for about 10 days. I felt like I had taken my Parkinson’s meds, though I hadn’t, and when I would take them, I would get severe dyskinesia, which was a sign that I was overmedicated.

December 18th – time to get turned on

Just 12 days after surgery, I was scheduled to have my stimulator turned on (insert inappropriate innuendos here). I’ve read stories online that talk about having to wait a month or month and a half to get turned on, but things are more efficient in the Netherlands, I suppose. The swelling was gone, but my head still felt raw and numb in certain areas. None-the-less, I met with the DBS nurse (along with my wife, and my mom, who wanted to stay in town for the lighting ceremony), and she connected me to a device that itself was connected to a Windows Surface. For the next three hours, we tried different leads at different settings to determine our initial configuration. Things would likely change later, but we needed a starting point.

After three hours, we had determined the initial configuration, and I was given the stimulator remote. I was allowed a certain range to turn up the voltage on my unit at the current program. I have since noticed having to “turn myself up” every few weeks or so. I’ve been told that this is normal, and I could continue going up until I’m at a stable current and don’t get dyskinesia.

Overall, the DBS experience has been a great one, and I would do it again in a heartbeat. I can turn in bed, walk quickly (and even run briefly), and type quickly and for a long time (with an average of about 30-wpm, my top was 100-wpm, but I’ll take it!). It isn’t all roses and puppy dogs, however. Surgery only worked on physical symptoms, so things like on-going fatigue (my most significant current symptom) and feeling cloudy are still there. Getting holes in your brain also doesn’t come without a cost – my short term memory and recall have been affected and remembering something my wife just told me can be difficult (or is it just an excuse? Just kidding).

With all of the downsides, I would still do it again and again. If I had to have surgery every six months for the rest of my life in order to feel how I do compared to how I did, sign me up! Luckily, I don’t have to have surgery again until a cure is found for Parkinson’s, at which point I can have the unit and cables removed.

Until then, I will keep moving forward. I hope you have found this article useful and that you will decide to go forward with surgery if you are a candidate. I’m a believer, and you will likely be one as well.

Dear reader,

I am proud to release my new book, Parkinson’s Warrior: Deep Brain Stimulation, A Journey to Relief. The book details my journey with DBS, explains the procedure, and gives hope for those seeking relief from this relentless illness. If you would like to learn more about DBS, I humbly recommend you purchase this book. It is now available on Amazon.com and other bookstores in print and as an ebook.