What’s it like to get DBS surgery?

deep brain stimulation for people with Parkinson's

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.

deep brain stimulation

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.

Are you a Parkinson’s Warrior?

people with parkinson's doing yoga

Ever since I developed this website, people have asked me: “what is a Parkinson’s Warrior,” and “How do I know if I am one?” I’m here to dispel any myths about what it takes to be a Parkinson’s Warrior and lay out the truth about not only surviving but thriving with Parkinson’s.

What are some myths about being a Parkinson’s Warrior?

Myth #1: “You must lift weights, be buff, and be in amazing shape to be a Parkinson’s Warrior.”

This is absolutely not true! Being a Parkinson’s Warrior is all mental, and not at all physical. While it’s true that Parkinson’s Warriors are likely to be in better shape than non-Warriors, but that’s not a requirement. It’s all about approaching life with the right attitude.

Myth #2: “You must have a very discerning diet, eat lots of plant-based foods, and drink lots of juices to be in your best shape.”

Again, this is not true! While diet is important for People With Parkinson’s, everyone has their own requirements and you should not go overboard with your diet. Extremes are bad, especially if you can’t maintain consistency over a long period of time. The occasional (even daily) juice is fine, but make sure you are meeting all of your dietary needs for personal health.

Myth #3: “I had a bad day, and feel like giving up. I guess I’m not a Parkinson’s Warrior.”

Stop putting yourself down! We all have those days that we just want to stay in bed and shut out the world. It’s ok. This is a part of the disease and each day will be different. Having a bad day, a bad week, a bad month… is all normal. The important thing is staying strong, and convincing yourself that this too shall pass and you are willing to move forward when the opportunity presents itself.

So what ARE the traits of a Parkinson’s Warrior?

  • Parkinson’s Warriors accept that their bodies are no longer capable of doing what they used to, and they adapt to the new reality – use special eating and walking devices, take their time and don’t feel rushed by the world around them, and yes, ask for help when they need it!
  • Parkinson’s Warriors do their best to stay positive and don’t let the disease take over. Parkinson’s is tough, and having to deal with it day in and day out is tough. But you know what’s tougher? YOU! You may not be able to control your body, but you can control your mind.

  • Parkinson’s Warriors always move forward. Even when life gets them down, they’re willing to put the bad things aside and keep living, for themselves, for those who love them, for the world, which needs them and their brilliant energy.

So are you a Parkinson’s Warrior? If you’ve read this far, I would guess YES!

Join us for discussions and inspiration on Facebook.

Parkinson’s Warrior Book Now Available!

parkinson's warrior book

I’m proud to announce the release of my new book, Parkinson’s Warrior: Fighting Back and Taking Control. Here is the description!

Nick Pernisco was busy with a promising academic career when a Young Onset Parkinson’s diagnosis at age 33 upended his carefully laid plans and almost derailed his life. This is the story of how he learned to cope and thrive – through education, self-care, and the power of adopting a warrior mentality.

PARKINSON’S WARRIOR provides information and inspiration for all People with Parkinson’s to live a better, happier, and healthier life. Through the lens of his experiences and learnings, Nick shows you how to move past grief to fight back and take control, so you too can become a Parkinson’s Warrior.

From the introduction:

There are at least one million people diagnosed with Parkinson’s disease in the United States and up to 10 million around the world. This means that, including loved ones, there are more or less 100 million people affected by this disease worldwide. You may be one of these people.

Perhaps you have just received a diagnosis, or perhaps you have known for years. Perhaps your husband or wife has been diagnosed with Parkinson’s, or perhaps it was your father, grandfather, mother, grandmother, son, or daughter. Perhaps you are a friend of someone who has just been diagnosed. This is a disease in which the more you know, the better you’ll live your life. Understanding how those of us with Parkinson’s should take care of ourselves, how to fight the daily battles, and how to develop a long-term plan for living well will help us lead better lives. This book will provide those of us affected with the tools we need to take control of the illness and improve our lives.

When I was first diagnosed, I went through a long spell of depression and uncertainty. Before Parkinson’s, I thought I had my life figured out, but everything I was working toward went out the window after receiving the diagnosis bombshell. I felt like my life was over and I was emotionally lost. Faced with the prospect of having a shorter amount of time to work in my career, to do everything on my “bucket list,”, or even worse, of becoming disabled before I could do anything more with my life, I frantically jumped into every new thing at which I thought I could succeed. I thought I had to have new experiences and check off all of the items on my bucket list before it was too late. I tried going back to school several times, I started a new company, I ran for public office, and I did many more zany things. I overwhelmed myself, and I eventually burned out. That was when I decided I needed to change how I approached the treatment of my disease, but more importantly, how I approached life. I wasn’t the same person before being diagnosed, and things needed to change if I wanted to be happy and as healthy as possible.

I learned everything I could about Parkinson’s, and became an expert patient. I read all of the books about Parkinson’s, both for patients and for professionals in the field. I read all of the latest research and began keeping track of all of the new treatment options. After a few months, I knew more than enough to have an intelligent and productive discussion with my medical team. I could work with them, for example when they would suggest a new medication, and we would be able to have a lively debate during our appointments. I learned all about medications, supplements, exercise, nutrition, and everything else related to the disease and its progression. I developed my own system for tracking the various aspects of the disease, and eventually developed a mobile app that made it easy for me to keep track of the various aspects of the illness.

In addition to information, I believe all PWPs need some inspiration in their lives. Life with Parkinson’s doesn’t need to be about living life with negative feelings. There are ways to live a happy life while also living with Parkinson’s. My hope is that my story will serve as an inspiration to you and that my experiences can help guide you and make life a little easier.

The Journey To Take Back My Life Has Begun

deep brain stimulation

“a journey of a thousand miles begins with a single step” – Laozi

As I begin my journey to have Deep Brain Stimulation surgery to help alleviate my Parkinson’s symptoms, I thought it would be good to keep a journal of all the ups and downs along the way.

I’ve been battling Parkinson’s Disease since I was about 30 years old, and I am currently at stage 3 progression of the disease. At this stage, medications don’t work as expected and side effects like dyskinesia and dystonia have become more painful and intense.

While Deep Brain Stimulation is risky and highly-invasive brain surgery, I’m at the point where Parkinson’s is seriously affecting my quality of life. Walking has become difficult, and I have severe on-off phases throughout the day, leaving me exhausted and unproductive. In the past few years, I’ve had to quit several beloved activities, and my worldview has become smaller as a result. I’ve weighed the risks and benefits, and I’ve decided it’s worth it for the chance at a much better 40-50 years I may have ahead of me; Parkinson’s isn’t fatal, and there is still a lot I want to do!

The story thus far

I had been contemplating Deep Brain Stimulation for quite some time, but it was only in the past couple of years that I became serious about it. The severe side effects of my medications have already lead me to leave business school, stop my community activities, and think smaller about life in general. The surgery used to be considered a last-ditch effort to alleviate symptoms (but not cure the disease), but for people under 40 it’s seen as a good option early on so that I could continue working, going to school, traveling, being involved in hobbies, and maybe even jumping back into community activism.

In November 2017, I had a consultation at my clinic, the Swedish Neurology Institute in Seattle. I was told that, yes, I did qualify for DBS and that I was physically and mentally (cognitively and emotionally) fit for surgery. However, there were a couple of hurdles that stopped me from booking a surgery date in February of this year.

A bit of background

There are two targets in the brain for DBS, the subthalamic nucleus (STN) and the globus pallidus internus (GPi). Because of my severe dyskinesias, my neurologists recommended the GPi target. Great, let’s do it. But wait… the DBS device being used right now is the same that’s been used for 25 years. Thanks to patent laws and tough FDA regulations, Medtronic has had a complete monopoly over the technique in the US. There is new tech now available from companies Abbott and Boston Scientific, both of which use a thinner multi-directional lead (causing less brain damage during surgery and fewer side effects), and with a longer battery life. But… this technology is only approved for the STN target in the US.

Bevause of the health system in the United States, if I wanted to have the newer devices used for GPi, it would be an off-label procedure and my insurance wouldn’t cover as much of the surgery. The surgery with the old device would cost $500,000, and I would pay about $12,500 out of pocket. The off-label surgery could cost me tens of thousands more.

There’s another option

Through my research, I discovered that the new device from Abbott is pretty popular in Europe and surgeons have been performing the GPi-targeted surgery with it for about five years. Ok, this is great. Is this an option for me? Well, it so happens that my wife, Rosaline, works for a major Dutch company. At around the time I began considering DBS, a perfectly-timed job offer came from the company’s headquarters in Amsterdam. They would sponsor her, and as her spouse, I would also get full health coverage under her policy. Under her health plan, which would cost about €200 per month, my total out of pocket for the DBS surgery would be 300!

A slow pace of life with consistency and low stress are musts for people with Parkinson’s. Instead, I chose to throw my life into the chaos of living in a new country, with lots of unknowns, the stresses of learning my way around, and without knowing anyone but Ros, all for the possibility of having a better outcome than in my home county. Because, you know, #yolo.

This is the story of how I try to get my life back. I promise it will contain drama and thrills, and from time to time, hilarity will ensue. Sign up for my e-mail newsletter to follow my journey.