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.
Towards the end of last summer, I was challenged by my neurosurgeon to dedicate 100 days to getting as strong as possible, physically & mentally. He hoped that during that time, I would be able to stay healthy, and I would go into the fall ready for what we already knew was an inevitable shunt surgery. So, along with a couple of my friends and my strength training team, I jumped into an incredible 100 day journey. I committed to posting once a day on my Instagram account— documenting, recognizing, and acknowledging the things I did every day to become stronger. It was really fun on some days, and really challenging on others.
Unfortunately, my brain didn't cooperate, and I had my 16th brain surgery on the 30th day. I took a few days off, then started up again— pressing myself to find the strength in the many tiny victories of recovery… and using my tears to fuel my drive for better days.
I finished my 100 days of strength on Thanksgiving Day. On that day, I reflected on the path I had followed for those three months. The nights in the gym, and the talks with my friends. The brain surgery, and the recovery that followed. The quotes that pushed me to keep going, and the daily battle to stay in the arena. I had finished the challenge, and I was stronger. In that moment of reflection, I was so thankful that I have people in my life who care enough about me to push me relentlessly, and who are never afraid to walk with me through the valley of the shadow of death. We do it together, and we come out stronger.
I’ve had an incredibly difficult year. I’m recovering again from surgery, and it’s been a difficult few weeks. But, today at lunch time, I was looking through the photos on my phone, and I stumbled upon the video montage of the 100 Instagram posts, that I had uploaded to YouTube. It made me feel a little emotional, because it was a reminder of something I have learned this year… That I may feel like I’m struggling right now, but I am in total control of myself, my thinking, and my actions. If I choose to be strong, I am strong. And I choose strength.
Today, I’m going to start a new #100daysofstrength — and this time, it’s different. Last time, Dr. Yundt challenged me, and this time, I am challenging myself. I’m not able to work out for another week or so, but every day I will honor the journey to more mental, emotional, spiritual, and then… physical strength.
Follow my #100daysofstrength on Instagram @stayinthearena
This week, I’ve been in the arena, battling my way towards recovery after my seventeenth trip to the operating room courtesy of hydrocephalus. I’m thankful, I’m happy, and I’m frankly relieved to be through the worse part of this process, yet again. The surgery was successful and smooth. All of the work that I put into preparing for it in the past few months has paid off, paving the way for what we hope is the best-case scenario in terms of recovery. I literally have flown through this surgery, and I’m looking forward to getting through the recovery as well.
I am never in this arena alone. I have my medical doctors, my rehabilitation and strength team, my mental coach, and of course my friends and family to thank… for standing by my side in all of this, and being relentless in their pursuit of better, always. Thank you. I’m a lucky girl, to have so many amazing hearts, minds, and souls in my corner. Not to mention the unbelievable and surreal support I receive via social media and the blog. This morning, my massage therapist and I realized that on the day that I had surgery last week, I received text messages from three countries, and Instagram messages from seven countries. That just blows my mind. The internet is an amazing thing, but nothing has done more to shrink our globe than social platforms like Instagram, where complete strangers can connect over common ground. Thank you.
Confession: I have a love-hate relationship with Pinterest.
I love it for the vast catalog of mindless entertainment, information and inspiration that it provides. Sometimes I hate it, when my clients bring all sorts of very impractical-and-not-real-life remodeling ideas to meetings. I try to visit the site at least a few times a week - not only to gather information and ideas, but to stay one step ahead of my clients… so I know what kinds of impractical-and-not-real-life remodeling ideas are trending in my future. It’s often during those “research expeditions” that I find that my true inspiration comes from the quotes that people share. I quickly transition from searching home design images, to searching quotes from all sources. I pin quotes from Bible verses to the Dalai Lama, and from Hemingway to Cheryl Strayed. Some are sentiments that make me think, and some make me smile. There are a few that I save to my phone, so I can send them to my friends. Others become journal entries, or inspiration for future blog posts.
Every time I have surgery, I try to come up with a theme for getting through the tough days right after the operation. It’s just something I do… sort of a mental strategy. This time, I decided that each day, I would jump on Pinterest, and pull a quote, and that would become the mantra for the day.
So, in honor of surgery/recovery #17, here are my first seven days of battle, in quotes.
Day #1 - (surgery day) I survived because the fire inside me burned brighter than the fire around me. (Unknown)
Day #2 - (home!!) Because when you stop and look around, this life is pretty amazing. (Unknown)
Day #3 - The moment that you change your perception, is the moment that you re-write the chemistry of your body. (Dr. Bruce Lipton)
Day #4 - Toss your hair in a bun, drink some coffee, put on some gansta rap, and handle it. (Unknown)
Day #5 - Chin up princess, or the crown slips. (Unknown)
Day #6 - (first partial day back to work) Let’s start by taking a smallish nap or two. (Winnie the Pooh)
Day #7 - In the end, only three things matter; how much you loved, how gently you lived, and how gracefully you let go of things not meant for you. (Buddha)
-My Instagram post from last night: Safely resting on the other side of #brainsurgery #15 ⚓️💙 it was a super long day, and I'm sore and tired, but the procedure brought almost instant relief from the pressure, and we are so thankful. 💙⚓️ we'll move onward tomorrow, but for tonight, I'm resting, breathing and listening to music... and no longer fighting back tears of exhaustion.
The surgery went as well as we had hoped; my shunt valve and anti siphon valve were both replaced, and I felt almost immediate relief from the pressure related pain. We are back home in Salem already, and since I'm so tired, it seems almost surreal that it even happened. But I'm thankful it's over, and we are heading back towards where I need to be physically.
I always trust the hands that hold my head.
This morning, the spring rain is falling here in Oregon, washing the landscape and cleansing my soul. It’s been an interesting couple of months. I’ve been retreating a little bit - pulling back, processing, and preparing myself mentally for the road ahead. After several months of spilling my thoughts and sharing my journey every week, I’ve needed this time to rest and remember who I am. In this period of stillness, I’ve had a chance to reflect on where I’ve been, and where I’m going.
One year ago, the focus of my treatment shifted, and my life changed forever. Under the guidance of my OT/PT, we began to address the current condition of my central nervous system (CNS), and the trauma that has resulted from over ten surgeries on my brain in just a few short years. Until that point, the sole focus of my medical team had been on my hydrocephalus, and my shunt. The shunt has always been the cause for the concern, the pain, and ultimately, all the brain surgeries. Unfortunately, we can’t do anything about the fact that my body needs a shunt, but hates it. At this point, I’m only averaging 3-6 months in between surgery episodes. So when my therapist told us that we would be treating my pain by working to soothe and heal my nervous system from the trauma of repeated surgery, it was a new way of thinking. In a nutshell, hydrocephalus can not be healed, but trauma can.
Trauma comes in many different forms- physical, psychological, and emotional. Brain surgery several times a year has put my nervous system through a firestorm of trauma - from the anesthesia, medications, and the physical wounds of surgery, to the emotional roller coaster and the mental exhaustion of simply trying to get through the episodes without complete system meltdown. The nerves and muscles in my face, my inner ear, and vestibular system have all been rocked and damaged. The physical symptoms of PTSD have also become more pronounced as each surgery passes. But most importantly, my CNS gets stuck in sympathetic response (commonly referred to as “fight or flight”). As my brain reels from trauma after trauma, my system is subconsciously guarding itself from further harm, at all times. This heightened state of awareness affects my sleep, breathing, and my ability to heal. The main focus of my therapy and rehabilitation this past year has been to assist my body in getting out of sympathetic response, and into parasympathetic response (rest and digest mode). Honestly, it’s very difficult. I had no idea that my brain was so damaged, and I was unprepared for how terrifying the process of unearthing all of the suppressed trauma would be. My brain only responds to certain people and in certain environments, and only lets go when I am safe, and completely fatigued, neurologically. I’m not sure if I will ever feel comfortable with this, but I know that I have a new respect for what I’m going through every time I have a shunt malfunction or surgery. After working on rehabilitation with this focus for just a year, I’ve realized that it is going to be one of the key factors in my success, for the rest of my life.
In 2015, I had a total of four surgeries. On paper, it was the worse year we’ve had with my brain to date, medically. However, by treating my CNS to heal the trauma after each surgery, we have been able to keep on track with the strategies that have historically allowed me to combat my hydrocephalus successfully. I’ve stayed active and strong, worked full time, and maintained the stability that I have strived so hard for in the past few years. While this has been one of the hardest years of my life, it’s also been one of the healthiest, and one of the happiest years. My mental perspective has also changed as my medical reality has evolved. I’ve always been a fighter, but now I know that I have to make an active choice to be well, and that only I can put in the work necessary to make that happen. It’s a daily challenge to to reach deep inside myself, choose to let go, and trust this painful and frightening process.
My current shunt is five months old. Sometime around the beginning of March, my pain spiked, and we began the all-too-familiar process of trying to right the ship to avoid the inevitable. We’ve tried everything.
I’ve rested, and I’ve pushed.
I’ve medicated, and I’ve detoxed.
We’ve adjusted, and we’ve waited.
I’ve got pages and pages of journaling and documentation of previous shunt failures, and treatments and tricks that have helped. In the past two months, I have poured myself into those logs - seeking anything that seems like a repeated pattern, and trying everything I know to do. And, in the end, we fought a good battle, and I’m proud of where I am. I’m strong, I’m at peace, and I’m ready. But there is nothing left to do, except to replace the shunt valves and start over.
I’m committed to finding the clearest path for my brain to travel, while it processes the trauma that I’m about to add to my system. This is about the physical aspects of recovery, but it’s also about mindset. It’s about being a fighter, but not fighting the process. It’s about trusting my team, and myself. And it’s about taking the shortest path through the shit, which is unfortunately straight through the shit. No detours.
There is no greater gift than for someone to care for you so much, that they are willing to get down in the trenches of life with you in your darkest hour and weakest moments. You look them in the eyes, let them see your pain, and are comforted by their presence in these moments of transparency. I’ve said this before, but I am unbelievably blessed by those who hold my heart. My family, my friends, and my community surround me, covering me in love, encouragement and prayers. I’m not alone, and together we stand in this battle. That's the truth.
Let’s do this again. We’ll hit the reset button, and show the world that we will be ok.
Surgery #15 - scheduled 5/25/16
Last month I had my #13 and #14th hydrocephalus related surgeries. Nine of these 14 surgeries have been since 2012, and every one of them have come with unique circumstances and challenges. Even though my husband and I have always tried to take them in stride, we make a vow to change or learn one thing each time that might make the process a little bit easier. Some of these things have been really practical, and other things are simply for comfort. We want to share some of our routines with you all, in hopes that they might help anyone else out there who is dealing with a lot of hospital stays and surgeries.
Live and love between the madness.
Here’s to the relentless pursuit of everything that’s important.
Stay strong, my warriors.
Two weeks ago, Clifton and I lay in bed in the middle of the night, just hours before our 6am check in at the hospital. I was heading to surgery for the second time in a week, and we were trying to get our heads wrapped around the situation we were about to embark on. As often happens the night before surgery, we laid awake for a good portion of the night, listening to music and talking. When I was finally tired enough to fall asleep, Clifton wiped my half-dried tears and asked me what I was most looking forward to the next day, and I didn’t even hesitate. “I can’t wait to see Dr. Yundt in pre-op; because then I know I’ll feel better.”
The next morning, for the ninth time in just over three years, we prepared for shunt surgery, going through the motions of all of the preparations - the paperwork, the IV, the infection prevention wipes, the sticky plastic-lined heated paper gown that hooks up to a warm air supply. Waiting. Watching the clock. Wishing I could have a sip of water. Listening to more music and breathing. The nurses at St. Charles Medical Center in Bend, Oregon are amazing. They are positive, empathetic, and encouraging. But almost all of them recognize us now, which means we’ve been there too much. We answer the same questions over and over. “Aren’t you from Salem? Why do you drive three hours to come over here for care?”
And the answer doesn’t ever change, again, without hesitation… “for Dr. Yundt.”
Then, he comes in, finally, and takes his sharpie and marks my forehead. Looks me directly in the eyes. Softly curses how much hair I have. Jokes about shaving it all off. Asks me what kind of music we should listen to in the operating room. Asks Clifton if he has any questions. Then, it’s over. The waiting, the wondering, the pain. By the time I wake up, almost every time, it’s immediately better. And as soon as I see him, I’m thankful, and I feel better.
Navigating life with hydrocephalus is a tricky balancing act. I want desperately to be as healthy as possible, and I’d love to never have another brain surgery, but unfortunately, that’s probably not my reality. I’ve never had a shunt last longer than 18 months, and it’s complicated. So I’m not sure where I would be if I didn’t have a neurosurgeon who I can completely trust. The battle is so convoluted and twisted at times. Confusing and frustrating are words that don’t even begin to describe the emotions involved in trying to stay on top of symptoms, surgeries, and recoveries. And I am lucky, because I have found a surgeon who is a good fit for me. I feel like I can tell him anything - even in the most difficult of times. I work hard at not questioning his decisions when it comes to my care, and I work even harder to make him proud of me, always. I want him to know that I’m doing the absolute best I can, and even if I’m not perfect, I’m going to give it my all, every time.
The night before the very first time Dr. Yundt operated on me, Clifton and I sat in his office and had a meeting with him about the path that lay ahead of us. It’s crazy to think that at the time, none of us had any idea what that would truly mean. We went through the general outline of the procedure, what the game plan was, and what to expect. He asked us if we had any questions. Then, he said something to me that I will never, ever forget. He said, “Ok, here’s the deal. From tomorrow forward, it’s my job to make the decisions about what happens with your shunt. I’ll need you to follow my lead on that. And from tomorrow forward, it’s going to be your job to get as healthy as possible, and live the best life you can, in between whatever may happen.” In that meeting, he asked me to agree to that. I looked him in the eyes, and promised him I would trust him with the decisions regarding my shunt. In the three years that have followed, I’ve been scared, I’ve been frustrated. I’ve been in pain. I’ve been angry. I’ve been hurt. I’ve cried, I’ve sobbed, I’ve wept. And I’ve worked at getting healthy, and staying strong mentally and physically. I’ve trained and I’ve fought. I’ve tried many different therapies and treatments to do my part, and keep up my end of the bargain. But I have never gone back on that promise. I trust the hands that hold my head. Because he asked me to, and I told him I would. Sometimes that’s all you have; trust in the midst of chaos.
Happy New Year, friends.
Here's to the relentless pursuit of everything important.
Truth: This year I'm even less prepared for Christmas than I usually am. I haven't ordered holiday cards, or purchased a gift for my husband. Not that I'm too worried about it... Christmas has never been a big deal for Clifton and I from a material standpoint anyways, and this year our focus is once again shifted to just being together. As you all know, our lives took a sharp left hand turn a couple of weeks ago, when I ended up needing two shunt revision surgeries in less than a week, with some unexpected complications, and we are working our way through the beginning of what is proving to be a difficult recovery.
What we are going to give ourselves for Christmas is an entire weekend "away" from my shunt and the worries that come along with it. We are going to spend time with our family and friends, and take time to appreciate the things that we have, and the time that we have together.
In reflection, I have already received so many amazing (true) gifts this year, that could never be replaced. For these things I am eternally thankful, because these are the gifts that can't be bought:
For these gifts, I can not express the depth of my gratitude.
Merry Christmas to you all.
Humbly, with much love,
In the summer of 2012, I made some decisions that changed the course of my life forever. At the urging of my neurosurgeon, I completely overhauled my lifestyle, with a new focus on getting strong and healthy. I did all of this so that I could be better prepared for any future surgeries that would be required to treat my hydrocephalus.
In the years since then, and in the numerous surgeries and recoveries that followed, I have learned more about what my body needs to persevere through this journey we call “shunt life”. The most important component has been strength. The stronger I am physically, the easier I seem to get through the surgeries and the difficulties of recovery. Second to strength, is endurance, which I really don’t train for. I don't run, bike, or do any cardio exercise to specifically improve my endurance. Most of the time, I just rely on my strength to carry me through life as needed.
However, mentally, I am finding that this battle takes more endurance than strength. I am learning and accepting that I don’t have to be strong all the time, especially with those in my inner circle. It’s ok to be heartbroken, angry, and frustrated from time to time, especially when only months pass between shunt failure episodes, and I grow emotionally weary of the fight. But I have to stay steadfast, for the long haul. Sometimes my husband has to remind me that I have the endurance to complete this race. That it’s a long road, and I am not alone. There are others who have the same persistence, who walk by my side, and we will carry each other if the climb is too much at times. In this case, I must rely on my endurance to make me stronger.
The long road of my hydro journey took another turn this morning. After the easiest shunt revision surgery to date (at the end of July), and the best recovery in years, my shunt is once again in failure, and we found out that I am headed to surgery tonight. Right now I feel a mix of emotion that ranges from annoyance and defeat to exhaustion and relief. But I have to remind myself that it is the physical strength and the mental endurance that I know I have, that will carry me through this episode, and whatever the next steps may be.
Tonight, we’ll hit the reset button, and start again, in relentless pursuit.
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x20), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.