As a kid, I was pretty healthy and don’t remember being sick more than a few times. My mom said that I went through a period when I was really young when I had a few bad ear infections, but by the time I was a teenager, I had really never even been to the doctor for much. I did, however remember having bad headaches all through middle school, and with increasing intensity and frequency in high school. I was a pretty serious student, and read a lot - often in bed, late at night - my mom would tell me that reading in the dark could make my headaches worse… and it probably did. When needed, I just took a couple of Advil and toughed out the pain, and it wasn’t until my senior year of high school that things got really serious. At the time, I was working out a lot, and lifting weights several times a week. I started having episodes of tingling and numbness in one side of my face, that would come and go throughout the day. When I first told my parents about it, they were concerned, and we thought it might be some sort of neck issue or pinched nerve from my weight training, since I was pretty healthy otherwise. My dad took me to see a chiropractor for an adjustment, and they did and exam of my neck, which seemed okay. We then went to see our primary care doctor, and eventually a CT Scan was ordered. One look at that CT Scan and it was pretty obvious where the pain and the tingling were coming from; I had a massive build up of cerebral spinal fluid (CSF) on my brain…. hydrocephalus. It was actually remarkable that I didn’t have more severe symptoms at that point, looking back at how much fluid was in my ventricles. It looked like a giant butterfly had taken over my entire brain. We were scheduled with a local neurosurgeon here in Salem, and within a week or so, I had my first VP shunt placement surgery, on my dad’s birthday, January 28, 1998. I was 17 years old. Over the course of that year, I finished high school, started working a summer job at my parent’s construction company, and struggled to figure out what I was going to do for college. I was still experiencing headaches, and some random attacks of severe abdominal pain. Our lives seemed to be revolving around the testing they were doing to try to figure out what was causing that pain. In December of that same year (1998) I suddenly became very lethargic and unresponsive. My parents rushed me to the hospital and found out that my first shunt had failed, and I was taken directly into emergency surgery to replace it. At that time, they did an exploratory surgery and found some damage to my gallbladder, which they removed, and the abdominal pain was instantly cured. At the time, the neurosurgeon’s explanation of why the shunt had failed was a little unclear to us, but we were all just happy to have it behind us again, and moving forward. However when the same thing happened just 6 months later, in early July of 1999, my parents were really upset. We were never really educated that the shunts had this high of a failure rate, and at that point I had gone through three surgeries in a short 18 month period. My mom and dad demanded answers from the surgeon, who apologized, but told them that he didn’t offer any other options. He explained that some neurosurgeons were performing the ETV surgery (endoscopic third ventriculostomy) with some success, and that I might be a candidate for that. They pulled me out of Salem Hospital and took me up to Oregon Health Sciences University in Portland. We decided that I could not continue having so many shunt failures, and the type of shunt failures I was having were so scary, with me not having any warning, and just becoming unresponsive in my sleep. There was no way that I could move from home, or go to college with that risk. So we decided to go for the ETV, which was performed at Doernbecher Children’s Hospital that same week. The ETV surgery took a lot longer for me to heal from - probably due partially to the fact that it was the second surgery I had in a one week period, but also, there was not that instant relief of the pressure that the shunt provides. I had some pressure related vision issues for a couple of weeks, and was weak and tired. It took a good few weeks before I started to feel better, and put life back together. We were all relieved that the nightmare was “over” and that I would not have a shunt that could fail and cause such scary episodes to happen. At that point, I’m not sure if it was a lack of wanting to really know, or a failure on the part of the doctor to tell us exactly what the longterm risk factors of the ETV surgery were, but my parents and I both felt like this was it. If the ETV worked and I improved, it was over. We had made it. I continued to struggle with daily chronic headaches, but after lots of testing and neurology appointments, it was determined that I was medically stable, and I decided to move on with my life. The headaches were annoying and painful, but not enough to stop me from doing what I wanted to do. I registered for school at Oregon State University, and started down the path of life. In the years that followed I met my husband and got married, established a life and a career, and was happy to have a relatively few health related issues. I saw a neurosurgeon and neurologist from time to time for check ups, and a primary care physician for overall care. There were a few times over the years between 2000 and 2011 that we felt like I was having an increase in headache pain that was worrisome, but at those times, they would do imaging to check the viability of the ETV, which always checked out okay, so I was sent on my way, with no further concern or information on the possibility of failure of the ETV. I really didn’t have any idea that the ETV would not be a permanent treatment for my hydrocephalus. Over the years, my headaches became more of an issue. I can’t really say that they were more frequent, because I had always had headaches every day. But they got worse, and my overall health was on a downward trend. I was working a lot, and my husband and I were very active socially. I thought that maybe the stress of balancing everything was wearing me down. I had gained weight, and was fatigued all the time. I felt as if I was managing, for the most part, but I was exhausted. In early 2012, things were getting worse, and we took some steps that would drastically change the course of my life. I had changed physicians, and was now seeing a neurosurgeon named Dr. Kent Yundt in Bend, Oregon - about a 2.5 hour drive from where we live. I felt like this made a huge difference in my level of care, because I was no longer lost in the shuffle of tens of thousands of patients under the care of the surgeon I had seen at the hospital in Portland. I much preferred the small town atmosphere that we experienced in Bend. My new surgeon had a theory for why I wasn’t feeling well; that although the ETV was still open and viable, my brain could no longer keep up with the rate of absorption that was necessary to make the overall system work. He explained to us that contrary to what we had been led to believe (or just what we had failed to learn), ETV’s fail at the same rate statistically as shunts - and that there was no guarantee for it to be a permanent solution to my condition. We were stunned. Due to my terrible experiences with the shunt failures I had in my late teens, I was very opposed to any idea of having a shunt again, ever. Over the course of about 3-4 months, Dr. Yundt patiently and systematically had me tested for every other reason why I could be having chronic daily headaches… ordering everything from vision and hearing tests, to blood panels and hormone testing - and during this time, I just got worse and worse. I still didn’t want to accept that I might need a shunt again, until he ordered a high volume spinal tap. This was the turning point. By taking a significant amount of CSF out of the entire system, the ICP was instantly dropped, and he could simulate what would happen if a shunt was placed. The next morning, I felt incredible. I had no headache for the first time in years, and I couldn’t believe it. I remember that morning like it was yesterday; we were staying in downtown Bend, and my husband and I walked around Drake Park, to Starbucks, and back to our hotel, in shock by what was happening, and trying to process the whole thing. Could it be that he was right? And if so, how long had my system been trying to keep up? How long had I been compensating, and living with too much spinal fluid in my brain? Had this caused any damage to my brain? And most importantly, how would my body handle having a shunt again? About two weeks later, on May 3, 2012, I had surgery to place a Codman Hakim programmable VP shunt, and we began our current journey. The surgery was performed at St. Charles Hospital in Bend. The things I remember about that surgery were that I was really anxious, My family was there, and that afterwards, my sister-in-law Kim brought one of their daschaund puppies into the hospital to see me. After that operation, I completely changed my lifestyle, embarking on an all-out blitz to get healthy and strong. I started exercising and changed my nutrition, lost weight, and began golfing. I felt so much better. Although my headaches had not gone away completely, my brain was relieved of all that extra pressure and it thanked me for that. And I was happy. I focused my energy on learning as much as possibly could about hydrocephalus, the different aspects of treatments and various ways to manipulate CSF and ICP levels. That shunt was the first and only one I've ever had last longer than a year. On the one year anniversary of the surgery, I had the word “relentless” tattooed over my heart. The word refers to something that my dad said to me growing up, and had evolved into the mantra that I live my life by: Be relentless in the pursuit of everything that matters. At 18 months, in October of 2013, I had an occlusion and we went in for a revision surgery. We were relieved that even in failure, it was easy to diagnose and fix the issue, before it escalated to an emergency situation where I would become unresponsive and super sick, like I had experienced when I was younger. We think that this may be in part due to the fact that the ETV is still open, to this day. It may or may not provide some sort of back up when the shunt isn’t fully functional. It’s really hard to tell. After that surgery, I remember realizing that this was more than likely going to be the pattern. A large percentage of shunts fail in the first two years, and we had almost made it two years. At the time I was in the best shape of my life; strong, healthy, and happy. So, we could do this. I just needed to do what my surgeon had asked me to do, which as to concentrate on getting healthy and staying strong, so we would be ready for whatever came our way. Unfortunately, over the course of the following five months, we would have three more revisions, for a total of four in just over five and a half months (December 2013, February 2014, and March 2014). The second and third of those were about eight weeks apart, and were both because the shunt was siphoning, and creating slit ventricles that could not be corrected. It was very painful and a long and frustrating process. The fourth surgery was an emergency surgery due to a wound infection issue - just four weeks after the third surgery, a portion of the incision opened up, where it had not healed properly, and the shunt tubing was exposed to the air. They deemed that it was too risky to leave the tainted equipment in my brain, and made the choice to replace it just in case. Throughout these five or six months, we tried to just focus on each recovery process, applying the knowledge that we had learned on how to help me bounce back as quickly as possible, and just tried to get thorough it mentally. I returned to work after each of these surgeries, sometimes within a week. I also continued to exercise and maintain my active lifestyle in between the surgeries, and the support that we had from friends, family, and medical team pushed us through a very difficult time. After the fourth surgery in that short time period, I was able to heal, and we moved forward. I had a great summer, and we hoped that it would be a long time before the next shunt failure. But the whole picture had changed. The reality was that we really weren’t dealing with a situation that was probably going to arise every 1 1/2 to 2 years… we were dealing with a situation that could arise any time - sometimes with absolutely no warning whatsoever. We had no control of the shunt - even though we believed we had a pretty good grip on the other aspects of my health. It was a hard thing to accept, and I had a hard time really understanding the whole picture. At that time I started seeing a pain psychologist for weekly therapy, who specializes in patients with chronic illness. Having someone to talk to and bounce thoughts off of was crucial for me during these times, and the times that were ahead. Late that summer (August 2014) I had a setback when I came down with a bad virus, followed by 6 months of increased pain, and frustrating inconclusive testing. Finally, in January of 2015, I underwent another shunt revision, with the replacement of the shunt valve (still a Codman programmable valve), and adding an Aesculap ShuntAssistant, which is a separate anti-siphoning device. The shunt had been siphoning again, and I believe it had failed sometime around the beginning of October, because that is when my symptoms changed. The fact that at the time I was having some virus issues with my CSF, created a situation where we had to wait in order to fix the shunt. It was by far the most disheartening and exhausting six months to date, with me suffering physically, mentally, and emotionally. I continued to work with the psychologist throughout this process, and while that was helpful, I just needed to move forward. Once we were through the shunt revision, I could focus on recovery and regaining my strength, and that ultimately allowed me to return to my life. In the months that followed, we were able to step back and analyze what had happened over the course of that episode. Together with medical team, we made a decision that in the future, if we suspect that the shunt isn’t working, every effort will be made to get through the testing, surgery, and recovery as quickly as possible. In mid July, after doing really well for a few months, I started having the classic symptoms that tell me that something is not right with my shunt. We traveled to Bend, and our team adjusted my shunt setting several times to try to right the ship, to no avail. True to his word, Dr. Yundt moved very quickly, and two weeks later, we were back in surgery for shunt revision, and he replaced both valves. Within 48 hours, I could tell the difference, and recovery went very smoothly. Unfortunately, the results were short lived, and within a few months, we were again dealing with increased pain and decreased functionality. December 2015 brought two more shunt revision surgeries, less than a week apart. My ventricular catheter was partially occluded, and was replaced along with the shunt valve and anti-siphon device. Again, my team moved quickly and aggressively towards a solution, as soon as the issue was confirmed, and our general protocol of possible solutions had been followed. May 25, 2016, I had surgery to replace both of my valves, after a few months of pushing through the familiar pressure related pain, and decreasing functionality. During the surgery, my surgeon found that the issue was related to occlusion of the anti-siphon valve, but due to the pace that I usually have shunt failure, he went ahead and replaced both valves. The relief was immediate. Unfortunately, the relief was short lived, and on September 7, 2016, we were back at square one, headed to another revision. My pain had spiked beyond what I could handle, I was sleeping 16-18 hours a day, and my eyes were unable to open all the way. Once again, I had almost instant relief after the valve was replaced, even though there was no visible sign of occlusion. Physically, I had a very easy recovery, but neurologically I am was fatigued. That manifested in some difficulty sleeping and mental exhaustion symptoms, which we are working to correct. The concern for my fragile scalp skin and the potential for future infections due to so many surgeries continue to be at the forefront of my care, and we were hoping to break the cycle of surgery every few months. We were able to do that, holding off the next surgery for 9 months, and I recently underwent anther valve replacement revision on June 9, 2017. My neurosurgeon decided to switch from the Codman Hakim to the Aesulap ProGav (just to see if my system will accept it for a longer period of time). I still have the Aesculap ShuntAssistant. I am thankful for a new start, and thankful that I have a team that is willing to make a jump. Which brings us to now. We've again hit the reset button, and we are going to push through the next few months of recovery with hopes that we will get a much longer break in between surgical episodes. But the focus remains on the life that is to be lived between the difficult times... because that's where the magic happens.
I am hoping that in reading this, it will help those of you who are close to me to better understand exactly what is going on with me, because I understand that it is overwhelming and disheartening to see these episodes happening over and over. I know it feels very helpless, but I believe that power starts with knowledge and understanding, so this is why I am sharing all of this with you. Thank you for taking the time to read through this and learn about what we are up against. And for all of my fellow hydro warriors, I hope that reading this will help you feel comforted knowing you are not alone in the battle. So many of us have similar stories. Ultimately, I hope that this website will become a source of inspiration, encouragement, and support - and a place to share information, resources, and love. The glaring reality is that hydrocephalus is a very confusing, misunderstood, and difficult condition to manage and treat, and is one that severely lacks the public awareness that hopefully will lead to better options for treatment. Together we will push forward, toward better days.
Disclaimer: I am not a doctor, or any type of medical professional. This is not meant in any way to be medical advice; it is simply my own account of what we have found to be beneficial for me. We hope that this will give you some inspiration or ideas to get started with, or provide you with comfort that you are not alone - you see how much work this is, and how much effort I have to put into being as functional as I am blessed to be. It's truly the relentless pursuit. I get lots of questions regarding specifics of medications, etc. via social media, and I am not able to share that information. All of my medications, pain management, and general care, is monitored closely by my primary care physician, at monthly appointments.