Hydrocephalus sucks. It really does.
It’s like sailing on the uncertain and ever-changing sea of spinal fluid, hanging on for dear life.
There’s a John Mayer song called “Emoji of a Wave” and a close friend of mine used to make me laugh by quoting the lyrics to this song to me. Whenever the proverbial skies would darken and the storms of shunt surgery were inevitable, he’d say to me, “Oh, Honey, it’s just a wave.”
We ride these waves… these waves of water on the brain.
But I’m always looking for ways to improve. I feel like we all are.
 
In my last blog post, I shared 10 random things about my journey
with hydrocephalus. 
Today, I want to share 10 things that I do regularly that I believe make a difference in my ability to fight this condition. If you are battling hydrocephalus as well - or if you know someone who is – I hope that this post is helpful in some way. I know that I have always found comfort in learning what has helped other people. Many of these concepts are also shared in more detail on my website. While I can’t give medical advice because I’m not a doctor, I hope that these topics can give you some ideas to ask your own doctors and therapists about.
 
Lastly, thank you to everyone who plays a role in
keeping me healthy and safe.
It takes a village, and I’m fortunate to have
​some brilliant and caring people in my corner.
We’re building this road, and I am committed to walking it
with relentless determination and reckless joy.
May we never stop learning.
 
#we.
 
 
Hydrate (and eat) regularly.
Hydrocephalus is defined as an abnormal accumulation of cerebral spinal fluid (CSF) in the ventricles of the brain. The human body makes about a soda can of new spinal fluid every day. Everything we put in our bodies either supports the body in making fluid or dehydrates the fluids in the body. Although it may be a very simple way of looking at this, I generally try to decide whether I feel like my symptoms are from under-draining (high pressure) or over-draining (low pressure) – then manipulate the fluid my body is making or absorbing by eating and/drinking accordingly. The body is a complicated organism, but I do find that sometimes I can help myself out just by staying generally consistent with my nutrition. Then I can adjust that baseline as needed. Ask your neurosurgeon or neurologist what foods and beverages will positively or negatively affect the levels of CSF in the brain. 
As a side note, I have found an anti-inflammatory version of the Paleo diet (no grains, legumes, or dairy) with an emphasis on high quality meats, vegetables, and fat has been very helpful in my quick physical recoveries from surgery. I am not always strict with this protocol, but usually try to follow it closely for a few weeks after each surgery.  
 
Exercise consistently.
I strength train with a coach five days a week. Staying active and as physically strong as possible is one of the most significant factors in my success over the past 5-6 years. In addition to staying ready for any issues that may arise with my shunt, I have found that even if the actual act of lifting weights is uncomfortable, I generally have lower pain levels if I am lifting regularly. I get a lot of questions from people in the hydrocephalus community regarding how physically active I am – and the most common questions are about what to do if exercise makes your pain worse. Again - I’m not a doctor. But what I have found is that generally speaking, physical effort is going to help with high pressure (under-draining) symptoms – which is the most common type of pain for me to have. Low pressure pain, from over-draining of a shunt, is more than likely going to be made worse by any sort of exertion. These things are important to track, and to tell your neurosurgeon about. Aron, my strength coach, is usually one of the first people to notice subtle changes in my functioning… because he is tracking what I normally am able to do and can note even small changes or trends in my training. Then we use that information to help my neuro team when they are trying to figure out if my shunt is occluding again. 
 
Lay down when I need to.
Just like the exercise thing, it’s important to understand how body position will affect your shunt. If you are over-draining, and activity is making things worse, the only thing that may help is to lie on your back, to slow the rate of the shunt. Sometimes, if just lying down doesn’t help, I lay on my back with an ice pack at the base of my skull, and/or elevate my legs. 
 
Medicate to the lowest common denominator.
I have a strict policy not to answer questions or share information about medications – past or current. This is an area that I strongly believe should only be discussed by a patient with their medical team. But I will tell you that in general, I try to take the least possible amount of medication that will reduce a reasonable amount of my pain and symptoms. I call this “medicating to the lowest common denominator”. For me personally, it’s important to put as little medication as possible into my body on a regular basis. I do have a pain management doctor who I work closely with to manage my care. 
 
Keep a fairly structured schedule.
I keep as close to the same sleep schedule as possible, seven days a week. I also exercise on the same days and keep my work schedule consistent. All of these factors make it easier for me mentally and physically – and again, really help with comparing with a baseline of energy and function when I start to malfunction. 
 
Understand how trauma and damage to my nervous system play a part in my pain and symptoms… and focus on soothing those factors. 
A few years ago, I started to study the nervous system and how the brain reacts to trauma. I found that a lot of my symptoms are consistent with the physical struggles that affect traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD) patients. This has helped me to understand and accept many of the issues that I experience – especially right after surgery. As it does with every patient, it has evolved over time. Some of my symptoms are very predictable now, but others are new and can be scary without that general understanding of what my brain and body are trying to process. My study of this subject has led to work with some brilliant rehabilitation experts, and I am always trying to find new ways to soothe my nervous system. Some of the things are simple, like swinging on a swing set. Others are more involved, like working with a therapist who specializes in a modality called Trauma Release Exercise (TRE). 
 
Stay spiritually engaged. 
My relationship with God is a big part of my life. It keeps me grounded in what I believe to be true. Above all things, I have great peace in my belief that God created me with a purpose. There may not be a reason for my pain, but there can be a purpose. I’m willing to stay in the arena and see how that plays out. That’s my choice, and I actively choose it every day. 
 
Practice mental training. 
I have written extensively on my blog about mental skills training, and I practice certain aspects of it every day. Meditation, affirmation, and relaxation techniques can all play a part in how I feel on a physical basis – because it affects how I experience pain. It doesn’t mean that the pain isn’t there, but it helps me get through it by controlling my response. 
 
See a counselor when I need extra support.
I have seen a counselor off and on for many years and have also done therapy with a pain management psychologist. All of the work we have done has given me a basis of strength on which to draw when things get hard. I am thankful for the support I have received from my counselors. I always encourage patients, parents, and children affected by hydrocephalus to pay special attention to their emotional and mental health, as it is so crucially important and makes a difference in your physical health as well! 
 
Listen to lots of music.
Music is an amazing healing tool, that has been scientifically proven to affect the brain in such unique ways, that it isn’t even fully understood yet. But listening to music as a form of meditation has been a part of my daily routines for several years now. I rely heavily on a constant stream of specifically curated playlists of music to get me through difficult spikes in pain, and to generally soothe my soul. Music truly heals. 
 

Here are 10 things I’ll tell you about my life with hydrocephalus (in no particular order). 
 
1. It hurts. 
The most common questions I get via my blog or social media relate to what my headache pain is like, and how I treat it. I have a strict policy that I don’t share specifics regarding medications, etc. but I will tell you that I do have chronic daily headaches, and I manage them with a combination of medication, lifestyle, and therapy. Mental training and meditation are also a part of my daily life, and through these I control my reaction and experience with pain.  
 
2. I believe that the trauma my brain (and body) goes through due to hydrocephalus can be healed-- if I am willing to put in the work. 
When I was re-shunted in 2012, I made it a personal challenge to learn as much as I could about neuroscience and the brain. I devoured everything I could learn about hydrocephalus and the treatment options that are available. I also researched the healing processes of the brain and body. I currently do strength training (weight lifting) five days a week, and work methodically towards rehabilitation after each surgery. Music therapy has helped me a lot. In addition I focus on my nutrition, hydration, and rest to assist in my healing. 
 
3. I love my neurosurgeon. 
I travel 3 hours for the surgeon that I have seen for over ten years. He is in a small market (Bend, Oregon) but the drive is well worth it. The most important things to me are that I communicate well with him, he knows my case, and I know he believes in me. Even when I have a hard time healing from brain surgery, and he knows I will give 100% effort, all the time. There is nothing more crucial than having a good working relationship with the person who is making game-time decisions on your behalf. 
 
4. My face tingles. 
The facial nerve that runs through my right cheek tingles intensely, is painful, and makes my eye droop sometimes when my shunt is acting up. This is not necessarily a classic symptom of hydrocephalus. But it’s a symptom that I have – a result of having the right side of my head cut open 20+ times. It’s just damaged. So… sometimes things happen that lead to other things happening. It’s just part of the deal. I try hard to take care of all those little things that come along with the overall package – because taking care of the little things makes dealing with the big things a heck of a lot easier. 
 
5. I have trouble with balance. 
Yep. It’s almost comical. My balance is so bad sometimes… I have fallen in the grocery store, on construction jobsites, and in the gym – all in the past 6 months! So, I work really hard at staying safe, and knowing the environments in which my brain gets a little shaky. Personally, I have a harder time with balance when my nervous system gets overwhelmed – so I try to stay out of situations where there is a lot of confusion… big crowds milling around, or a lot of flashing lights and colors. Those are things that bother me personally – you may have totally different triggers. But just know that if you struggle to stay on your feet, you are not alone!
 
6. It takes about 3 weeks after brain surgery for me to start to feel like myself again, and it takes about 6 weeks for me to fully heal. 
I have a pretty consistent response to surgery, and I am thankful for the predictability of these patterns. I find comfort in knowing that the horrible parts won’t last forever, and I am highly motivated to push for the good days. 
 
7. Sleep is a battle. 
Lying down makes my programmable shunt’s flow slow down, and I get really bad pressure headaches at night. I also have a lot of nerve pain now, which flares up at night when I lay down. I have never been able to get into a deep sleep if I’m propped up, so I just try to sleep the best I can. When I wake up in the middle of the night, I have to get up and walk around a little bit. Then I listen to a sermon from one of my favorite pastors, an Audiobook, or a sleep meditation until I fall asleep again. 
 
8. My hair is falling out. 
I was blessed with really thick long blonde hair – which completely covers my incision site. But my scalp has taken a beating on the right side, and recently I have had hair falling out in big chunks, which is really alarming. I found out that this is a common trauma response, especially after a lot of anesthesia… and I had 3 surgeries in 5 months in 2018. So I’m taking all the steps to protect my hair as best possible, but also to soothe my nervous system. It’s slowly getting better!  
 
9. Hydrocephalus affects my relationships with other people. 
This might seem obvious, but it’s worth saying out loud (or on paper… or in this blog post.) Sometimes hydrocephalus has had a negative effect on my relationships, but on the flip side… there are people in my life that I never may have known if it wasn’t for hydrocephalus. There are lots of things that can be said on this topic… In fact, it was one of the things I spoke about at the 2018 HA Conference – but the bottom line is that the people who are meant to be in my life will be there. Others, who are meant to be there for just a season, will come and go. Ultimately, this is my path to walk… and for those who make the choice to stand in battle with me today, I am forever thankful. 
 
10. I am grateful for the journey. 
When I was diagnosed with hydrocephalus at age 17, I had no idea how much it would change my life going forward. Recently I have spent a good deal of time studying ancient stoic philosophy. Learning about the stoic mentality has given me a better understanding of how people in history have overcome enormous obstacles. I have come to accept that the exact thing that has brought me the most pain and challenge in my life has also been the thing that has brought me the most purpose and motivation. I believe that hydrocephalus has made me a stronger person, and has taught me patience, endurance, and empathy for others who are in the same boat. I have committed myself to using the journey that I am on to try to help other people, by sharing my story and supporting them in their own. For these things, and for the incredible souls that are on this life path with me, I have relentless love. 
 
Over the years, I have shared a lot of things about my life with hydrocephalus, but I still feel like there are so many people out there who are struggling with loneliness in this diagnosis. If you are one of those incredible humans… if you have hydrocephalus and feel alone, or if you have a child who has been diagnosed with hydro and you are desperately looking for information, inspiration, and comfort… I’m here to tell you that you are not alone. We may be facing a giant mountain of uncertainty, but we will climb it together. 
 
Thank you for reading my words. And thank you for walking beside me. 
 
Here’s to our relentless pursuit, 
 
Amy

​You cannot love in moderation.

This is a line from a song called Land of the Living, by Matthew Perryman Jones.
Anytime I hear this song, it makes me feel emotional. There are so many words in this song that hit me like a ton of bricks, but this line is the most important.

You cannot love in moderation.

It reminds me to allow myself to be broken and open in relationships that are safe and reciprocal. To allow the walls around my heart to come down is the only way to have true connection with other people. Even though I know this, it’s still really hard. In my life over the past several years, there have been so many major changes. It’s not natural for me to allow myself to be truly seen by anyone, because I feel the constant need to guard myself. When I allow myself to love wholeheartedly, there is a deep ache that comes with the knowledge that I am allowing that person to be close enough to destroy me emotionally.

However, I do believe this is why we are placed on this earth together. I believe we are to care for the ones we choose to walk alongside, and that this is the true purpose in life-- and what makes all that pain worth the battle.

You cannot love in moderation
Dancing with a dead man's bones
Lay your soul
On the threshing floor

Between the walls of the river,
Shoulders bare the sacred stones
We made it alive
We are not alone

Kiss the ground
And change your name

Thank you Matthew Perryman Jones, for this beautiful song – that rocks my soul and brings be back to center.
Music heals.
​#musicheals

All my best,
Amy

“You know, Amy… At some point, you just have to be realistic about your condition.”
This was the feedback I received a couple years ago from a neurologist who was seeing me for my hydrocephalus. I’m sure she meant well. Actually, she might have even been trying to encourage me -- by lowering my admittedly very high expectations. 
 
But here’s the deal.
I’m not looking to “be realistic”. 
I aim to be extraordinary. 
Every day I work to discover the things that make my experience and impact in life more meaningful. 
I may not have the skills and knowledge to find a cure for hydrocephalus. However, I do have the ability to support the incredible humans who are working every day on new solutions. 
I am living every day to the fullest of my abilities, and I continually seek a better understanding of the things that are in my control. 
I do these things with some very committed and likeminded individuals.
​My inner circle is small, but it is mighty. 
Together we face forward, staying focused on what we can impact through perseverance and education. 
 
It’s why I use the hashtag #we in my posts.
WE are doing this together.  
WE are going to live and love between the madness.
WE are going to help the world understand the severity of hydrocephalus, and the need for better answers. 
WE are not going to settle for being “realistic”. 
WE are going to make an impact. 

Together. 
#we.
​- Am

for aron, who chooses to catch me, and absolutely refuses to waver. #we. 

Several years ago, a therapist suggested that I write messages to myself on post-it notes, and put them on my mirror. These photos have become a thread in the tapestry of my online life, but I have never shared what the notes mean to me. In this blog series, I will share a handful of those moments - in hopes that it will provide encouragement to someone out there. 

​Peace & Much Love.
- Amy

Love hopes all things, endures all things. 
I believe in love.  
I believe that my most important mission in this life is to make true connections with other human beings. 
I believe that there are no chance meetings; and thus everyone who comes into my life path is meant to be there. 
I believe that each one of those people have the power to change my life. 
I believe that through love and compassion, I can learn something from every single person I meet. 
And I believe that the person I am today is a direct result of all of the incredible people who have been divinely placed in my life. 
 
Love is hope, and love is being willing to stay in the trenches with someone you care about – not running away from them in times of struggle, but facing the storm head on, and running towards their pain. 
 
In I Corinthians 13:4-7, the Bible gives a guideline for how to recognize true, everlasting love:
4 Love suffers long and is kind; love does not envy; love does not parade itself, is not puffed up; 5 does not behave rudely, does not seek its own, is not provoked, thinks no evil; 6 does not rejoice in iniquity, but rejoices in the truth; 7 bears all things, believes all things, hopes all things, endures all things.
 
This is one of the most famous passages in the Bible – and it's a very popular addition to wedding ceremonies regardless of religious background.
As I have gone through so many difficult times in life, I have reminded myself of that last line (verse 7). 
Love bears all things, believes all things, hopes all things, endures all things.  
I believe that the only perfect, unchanging love is the love of God. I hang onto the fact that I’m not alone in any of this. When I can’t bear it, I can’t believe it, I can’t hope, and I can’t endure… the love of God can. And in those trenches of this painful life, when another person comes running at your pain, willing to share the burden, believe, hope, and endure.... hold them tight.
 
Love heals. 
Love endures all things. 

Stay in the arena, and love one another.
- Amy 
 
For MacKenzie. xo 

Several years ago, I went through a really rough patch with my hydrocephalus, where I had a total of 4 brain surgeries in less than 6 months. It was a pivotal point in my understanding of what living with hydrocephalus was going to be. Suddenly there was a new reality, that these surgeries could come in clusters… and that no matter how healthy I was otherwise, the bottom line was simply whether or not my brain would decide to accept and heal from the shunt surgeries that are required to keep me alive. 
 
It was during this time that I learned a valuable lesson. Even though I had zero control over how my brain was responding to the shunt, I found that I had complete control over my own reaction to these setbacks and repeated surgeries. Controlling my reaction really controlled my overall experience. Going forward from that point, I made a conscious decision to tell myself that this was just required maintenance. When the shunt needs to be repaired or replaced, I tell myself to “hit the reset button” and start over again. I’m not suggesting that I downplay the fact that this is brain surgery – believe me, it’s awful. But I do my best to keep it in perspective. 
 
I have often explained to my friends and supporters that if I treat brain surgery like it’s a giant catastrophe, my life will feel like one giant catastrophe. For the last several years, I have had brain surgery again and again – and for now, there is no guarantee that this frequency will let up. So, when something goes wrong with my shunt, I do everything in my power to take it in stride mentally. Controlling my emotional reaction makes it easier to navigate the physical challenges that are inevitable. 
 
This week I had my 22nd surgery related to hydrocephalus. This time it was a laparoscopic procedure to re-route my distal (abdominal) catheter, which was wrapped around my liver and rubbing on my diaphragm. As usual, it was a long and painful process to diagnose and work through this setback, and I’m relieved to once again be safely on the other side of surgery. It will take me a little while to get my energy and strength back to where I was pre-surgery, but I am ready to put in that work and move forward. Each day, I remind myself that the way I experience my own life is completely under my control. 
 
I am strong. 
I am healthy. 
I am capable. 
I am loved. 
And I am in relentless pursuit of everything that’s important. 
 
Hit the reset button. 
​Am

Stay focused, Am.
I’ve taken several tests to determine personality type, and all results have been the same.
I’m an Executive personality type on the Myer-Briggs, and an 8 on the Enneagram.
Driven.
Goal oriented.
Focused.
If there’s one thing I know about myself, it’s that when I was created, I was wired to chase knowledge and understanding. Once I have some understanding of the task at hand (even just a little bit), I use that information to move closer to my goals. When it comes to getting through the obstacles with my health, I tend to approach it the same way I would tackle a project at work or something in my personal life. I wrote this note to myself earlier this year, I was struggling with my hydrocephalus and the roller coaster of shunt failure was at full tilt.
Stay focused, Am. The pain and nausea that come with shunt malfunction are only roadblocks on the highway to solution. At the time, a plan was in place and we were moving slowly towards resolution – but it was a long and twisted ride. However, during those 5-6 months of struggle, I met several strength related goals, and was able to keep working right up until the surgery to replace my shunt valve in late May.
The decision and effort to stay focused helped me to clearly communicate with my doctors, remain calm, and go into surgery in the strongest mental and physical strength.

Stay strong. 
Stay beautiful. 
Stay in the arena. 

- Amy 

​In the late summer of 2003, a vicious forest fire ripped through central Oregon. When it was finally contained after 34 days of incredible battle, the B&B Complex fire had left a devastating mark on over 90,000 acres of pristine woodland. That summer, I spent a week teaching at a music camp in Sisters, Oregon. I’ll never forget the feeling of being so close to such a massive and powerful fire. The air was thick and smoky, and it felt like you could cut it with a knife. Large forest fires often create their own weather patterns, and the atmosphere felt volatile and unpredictable, as storms would rage through for several minutes at a time. The little mountain town that is usually crawling with tourists all summer long was dead, except for the thousands of woodland firefighters who were camped nearby.
 
Fifteen years later, the Santiam Pass still shows the deep scars of that fire. Since my medical team is in Bend, I drive that stretch of highway often, and in all seasons. With any long drive that you make repeatedly, you start to get the rhythm of the mile markers. I know exactly where the cell phone and satellite radio signal coverage cuts in and out, where all the passing lanes are, and the precise point at which you feel like you’ve left the Willamette Valley and officially made it to the mountains. The thing that I love the most about the drive from Salem to Bend is the way the terrain changes so much along the way. From the farm fields and orchards in the valley, to the lakes and huge evergreen trees in the mountains, no matter what time of year you make the drive the scenery always breathtaking. Then when you get up onto the pass, and you see the acres and acres of land still affected by that incredible fire, it’s shocking. Thousands of burned trees stand like charred scarecrows, with their arms stretched to the sky. In the winter months, when the snow is on the ground and the skies are gray, the 10 miles or so of skeleton trees seem more eerie.
 
Last weekend as I drove over to my neuro appointment, I suddenly noticed how much regrowth has started to happen in the pass. It has taken a long time, but the ground cover is vibrant and healthy… bright green against the blue sky, with summer wild flowers scattered among the trees. The mountains stand solid, strong, and unchanged, and the burned trees create a charcoal picture frame for all of this natural beauty. As I drove, it dawned on me that this regrowth is a perfect metaphor for life after challenges. I often speak about the power and peace that comes with accepting the fact that you are going to be different and changed on the other side of major life events – whether that is a new diagnosis, brain surgery, or a relationship change. Sometimes those events leave us feeling like this forest land – devastated and burned out. But faith is the confidence in things unseen-- the belief that eventually the landscape will grow and flourish again, if we simply keep standing tall – reaching for the sky with everything we have left.
 
Pain is going to change you.
You’re going to be different on the other side, and that’s ok.
We’re ok. We are HEALING.
The storms pass, and the wildfires die.
The soul remains, and the heart will stay strong if we will it to do so.
Be willing.
 
Find beauty in the broken.
Love,
Am  
 
for erika
#we.

I walked into my hotel room at 12:15am in the morning on July 1st, and shut the door behind me. Leaning on the door, I took a deep breath and finally let the tears fall freely. The emotions of the weekend flooded over me, and I sat on the floor and stopped fighting it for a solid 10 minutes.
 
Just a couple of hours before, the 2018 HACONNECT National Conference on Hydrocephalus had concluded, with all the participants on the dance floor. As I watched children, teens, neurosurgeons, researchers, HA staff, and family members smiling and laughing as they danced to the “YMCA”, I told myself that THIS. This is why we do this. This is what is important. We might not always have the opportunity to forget about pain, worry, and brain surgery – but we can always make the time to pause life, and connect with those on a parallel path.
 
What have we learned?
We have learned to support and educate patients grasping for answers relating to their own unique diagnosis-- because we are all different. Some of those patients and families are seeking a neurosurgeon that is a good match, while others may discover a shunt valve or product they were unaware of. I attended an excellent session about setting up special needs financial planning, a topic that many families have anxiety about.  As always, there were many sessions relating to symptoms of hydrocephalus, and detailed information about the treatments that are currently available. Patients and caretakers were supported with content related to mental and emotional health challenges that come from battling a chronic illness. In the research keynote, we learned where the future of surgeries and treatments may lead. And we had the opportunity to honor the pioneers of pediatric neurosurgery.
 
In terms of information, we all learned a lot. But the most powerful take-away for me is always learning more about the individuals in the hydrocephalus community, and having the opportunity to connect face to face. I love sitting with people and listening to their story. I was humbled to see the youth supporting each other. The joy and laughter of the kids, as they got out on the dance floor and shook their booties. Seeing parents sharing emotional moments with each other. It was amazing to have two of the girls that I've had the honor of mentoring there at the conference, and to see them connect with each other. I’ll never forget the hug I got from the young man after the relationship panel that I spoke on, or the exclamation by one teenager that I am much taller than I appear on Instagram. All of these moments are lessons. They teach me to be more aware. They show me the resiliency of the people in my community. And they drive me towards love and inspiration.
 
On the days when I cringe at the public nature of my own journey, I go back and read the messages that I have received from so many parents – sometimes only hours after the diagnosis of their child. I think about the terror and pain they are faced with, knowing their precious little one will be undergoing brain surgery. Even though they may find hope and comfort in reading my story, they are often devastated to find that I have had a total of twenty-one brain surgeries.
 
I said it several times that weekend – I will not stand for these children to go through their lives with only the treatment options that we currently have. The diagnosis of hydrocephalus almost always results in brain surgery, because right now the only treatment options are surgical—and often not permanent. I’m going to do everything in my power to make sure that this madness ends with MY generation. Everybody plays a part, and perhaps my part is to share my story and encourage others. But I can also support the ones whose role is in the research department, because they are the silent, unsung heroes in this fight. I believe in their talent, and I choose to believe that we will see advances before the next HACONNECT Conference in 2020 in Houston, TX! 
 
I sincerely hope that many of you will be able to attend the next conference, so I can meet you and hug you in person. If you are unable to attend, there will be opportunities to attend virtually – just like there was this year. As a side note, you can still register on the Hydrocephalus Association’s website, and view over 20 sessions that were live streamed – including my panel discussion on Relationships & Hydrocephalus. https://www.hydroassoc.org/watch-recorded-sessions-from-ha-connect-2018/
 
I have been truly blessed by the support I have received, and I vow to continue to battle.
 
In the famous “Man In the Arena” speech (for which my website is named), Theodore Roosevelt talks about the credit not belonging to the critic, who watches the fight from the sidelines. Instead, he says the credit belongs to the man that is actually IN THE ARENA – bloodied and falling, again and again. Every time I read this incredible statement, it strikes me that the man who is in the arena has made a choice to stay…. And that choice is the catalyst. We all get knocked down again and again in life – but each time, we have a chance to decide to stay in the fight, or bail. And the only way to win is to stay. So, my friends… I hope you choose to stay.
 
Stay strong.
Stay beautiful.
And stay in the arena.
 
It’s where the magic happens.
 
In relentless pursuit,
Amy

In January of 2016, I wrote a blog post titled “When are they going to get this thing figured out??”  I had just established my website the month before and I had no idea how much sharing that one piece of writing would change my life. At the time, I was recovering from back-to-back shunt surgeries, and I posted it primarily to answer the common questions about hydrocephalus that I received from my own family and friends. But it was also a bit of a personal rant… the things I needed to say, in my own plain-English, non-technical words, to help me process what I was going through. Perhaps, because of that rawness, it definitely hit a chord in the community – with literally hundreds of people contacting me and messaging me. And since that initial post, I have reposted it every time I have had another brain surgery. Over the past two years, it’s been shared all over the internet, and read more than 20,000 times total.
 
This week, I will be undergoing another shunt revision surgery – my 21st brain surgery. As shocking as that is for my family and friends, it’s not shocking for many people in the hydrocephalus community, who have walked a parallel path. While I am certainly hesitant and naturally apprehensive about going through this process again, I have complete confidence that my team has put incredible care into making this decision. And even though I’ve been really sick off and on all year and my pain is high, I’m physically and mentally strong right now, which I know will make a difference. I am well supported and we are focused.
 
That original blog post is still very applicable today and I’m still humbled that it has touched so many people around the world. But today, I decided to do an updated version with the same concept. These are the 10 most common questions I get regarding my condition and these are my own raw, unfiltered responses to these questions. More or less, I wanted to answer these questions as if we were sitting together and you were asking them. I hope that in some way, by sharing these experiences and thoughts, I can provide you with some comfort and information. Knowing that there are others out there who are going through similar experiences is one of the most incredible things that the internet has the power to provide. And when you can get some positive input in regards to a very negative experience, it can truly change your path. That being said, I have to remind you that I am not a doctor or any type of medical professional, and this is not intended to be educational at all. It is simply my own answers, about my own diagnosis and experiences.
 
As we move forward towards better answers for hydrocephalus, may we always remember that the credit belongs to the man who is actually in the arena, willing to stay, and battle – even when he fails again and again. May we band together in solidarity and strength, carrying those who need support, and remembering every day that the only thing that truly matters is human connection and trust.
 
1. What is hydrocephalus? Hydrocephalus is defined as an abnormal accumulation of cerebral spinal fluid (CSF) in the ventricles of the brain. When I explain it to people, I tell them that my brain does not drain spinal fluid properly. I developed obstructive hydrocephalus in my teens and was diagnosed at age 17. There is currently no cure for hydrocephalus and all treatment options include brain surgery. For more information, visit www.hydroassoc.org 

2.   Why have you had so many surgeries? The most common way to treat hydrocephalus is with a shunt, which is a valve and catheter system that diverts the fluid from the brain where it has built up and deposits it elsewhere in your body, where it can be absorbed. Hydrocephalus is shockingly common – even though many people have never heard of it. In the United States alone, there is a hydrocephalus related surgery every 15 minutes and it is the leading cause of pediatric brain surgeries.
While some patients are able to go many years without trouble with their shunt system, statistically, 50% of all shunts fail in the first two years. That being said, there are a lot of us that have a really hard time with our shunts – the only way to fix them or replace parts is brain surgery.
Click here for more information on my medical story.
 
3.   Why don’t the surgeries work? Honestly, this is a frustrating mystery and I think every neurosurgeon in America would tell you that. Again, I am not qualified to answer this question, but there are many reasons a shunt (or ETV) will fail. They occlude (clog), the catheters get brittle and break, they come unhooked, etc. I have averaged 3-4 shunt surgeries a year for the past several years – until this last one, which lasted almost one year.
 
4.   Who is involved in your care? I have been absolutely blessed and have put together an incredible team of physicians and therapists over the years. Of course I have a neurosurgeon, a primary care physician, and a pain management doctor. In addition to that, I have a strength coach that is very involved in my care, and a mental coach. When people ask me about how I manage my hydrocephalus, I tell them it takes a village. I have more information on the Resources page of my website, as well as the Hydro Treatments & Therapies page.
 
5.   How do they decide to do another brain surgery? My neurosurgeon makes the decision to operate only when he feels like that is the only remaining option. He has been my surgeon for a number of years and he knows me very well. I feel like this has always been an advantage for me, because he knows what I function and look like when I’m doing well, versus when I am having serious issues. From time to time, he has consulted other neurosurgeons to look at my case and I always appreciate how thorough he has been. In my opinion, the most crucial decision you make is to establish care with a neurosurgeon who is a good fit for you. I personally travel 3 hours from where I live to see mine, because he is someone I trust and can communicate with. It has made all the difference in the world for me.
 
6.   Is a shunt the only option for treatment? Some patients are candidates for a procedure called an Endoscopic Third Ventriculostomy (or ETV). Whether or not a neurosurgeon may decide to go with this option rather than a shunt, has to do with the patient, the neurosurgeon, and primarily the cause of the hydrocephalus that they have. It’s not an option for certain types of hydrocephalus. I had this surgery when I was 19 years old and while it is still viable today, my brain also needs a shunt to keep up. 
 
7.   How do you prepare for brain surgery (assuming it’s not an emergency surgery)? I try my best to prepare for surgery by getting things organized to the best of my ability. This includes unplugging from my job as much as possible, getting some good food options prepped, and making sure I have someone to stay with me during the process. In addition, I work on mentally preparing myself for the process, using visualization, meditation, and affirmation. It’s incredibly important for me to go into surgery feeling relaxed and confident in my team. There is always uncertainty with brain surgery and staying mentally in control of my thoughts and emotions are very important.
 
8.   What are the concerns and risks? As with all surgical procedures, there are risks involved. The concerns can also change from surgery to surgery and from patient to patient. But in my case, there has always been a high level of concern about the risk of infection and seizures. I have had a lot of trouble with my head wounds sealing up as well, so there are concerns with wound infection.
 
9.   What is the projected or estimated recovery time from your shunt revision surgeries? The correct answer to this question is that it’s different for every patient and for every surgery. I have had many shunt revision surgeries that have had similar recovery timelines, but then I’ve had others that have been much easier or much harder. That being said, in my own experience, I would say that my average recovery time to get back to 100% strength and energy is about 6 weeks. I am very physically active and I do my best to return to activity as soon as possible. I usually am off of work for about 4-5 days, then slowly integrate back into daily life. 
 
10.   How does this process affect the people who are close to you? I am incredibly fortunate and have an amazing network of family and friends that support me. I know that it is frustrating and painful for them to watch me go through the repeated surgeries and the chronic pain issues that come along with them, but I am thankful beyond words that they choose to walk beside me on this path. In my life, I see that as one of the blessings I have received and that I never take for granted. As a family, as a tribe, and as a team, we go through all of this together. We win and we lose together. In my blogging, I often use the hashtag #we. This is because when I speak of my journey, I use the term “we” as an authentic representation of the fact that I don’t do this alone. I walk this road with the most brilliant and loyal humans, and I am grateful.
 
To my Loves:
We are ready.
We fight. We love.
We stay in the arena.  
Here’s to the relentless pursuit of everything important.
Thank you for holding my head and my heart.
 
Peace,
Amy