My name is Angel. I was born in 1958 at Israel Zion Hospital. I was delivered with forceps because the umbilical cord was wrapped around my neck. 

At birth, I showed no signs of trauma. But at the age of 13, everything changed. I developed severe headaches and had trouble walking and maintaining my balance. My mom took me to our family doctor, who then referred us to Dr. Wesley at Beth Israel Hospital. Dr. Wesley diagnosed me with muscular dystrophy and sent me for a muscle biopsy. But my mom didn’t believe that was the correct diagnosis—especially as my headaches became unbearable. 

She sought another opinion and took me to Columbia Presbyterian to see Dr. Churchorian. That’s when I was finally diagnosed with hydrocephalus. I was told I had only a few days to live and needed emergency surgery to place a shunt. Cerebrospinal fluid (CSF) had been building up in my brain for 13 years, compressing it by three-quarters of an inch.  My family and I had a hard time accepting the diagnosis.  

 I’ve undergone 10 surgeries and have lived with a shunt for over 50 years. After my first surgery, I had to relearn how to walk and accept the reality of living with a shunt. I’ve always had to be careful to avoid any injury to my head. Each surgery has brought different symptoms, mostly confusion and headaches—signs that the shunt may be malfunctioning. 

Life with hydrocephalus has been overwhelming and brings daily challenges. Most days it feels like no one truly understands what it’s like. 

Despite everything, I’ve tried to live a full life. I graduated from high school, got married, had children, and now I enjoy spending time with my grandchildren, who bring me so much happiness.  

My advice to others is simple: live your life to the fullest and be happy. If something doesn’t feel right, check in with your doctor. Know that there are resources to help you. 

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

My hydrocephalus was caused by a ruptured brain aneurysm that occurred in the right posterior inferior cerebellar artery (PICA) near my brainstem.  I was flown from my hometown to Children’s Memorial Hospital in Chicago. After an unsuccessful endoscopic third ventriculostomy (ETV), a ventriculoperitoneal (VP) shunt infection, and two months in the hospital, I was finally able to return home with a VP shunt, having undergone nine surgeries.

After that initial stretch of hospitalizations and surgeries, I went eight years before headache symptoms began occurring regularly. I was able to make it through 10th grade without needing a shunt revision. However, between 10th and 12th grade, I underwent an additional nine surgeries due to recurring shunt malfunctions. A couple of these revisions required traveling long distances to find the proper neurosurgical specialist for my case. Eventually, I reached a point where everything felt stable. 

Unfortunately, two days before I was supposed to move to attend college, I woke up with symptoms of a shunt infection. I spent the next two weeks in the neuro-intensive care unit (ICU) with an external ventricular drain (EVD) and IV antibiotics. As a result, my first year of undergraduate study shifted to taking courses online. One silver lining was that my neurosurgeon decided to ‘challenge’ me while I had an EVD in place, and I was able to pass that test and leave the hospital without a shunt! I remained shunt-free for the next five years. 

Nonetheless, my baseline headaches and symptoms persisted throughout my undergraduate years and into my first year of medical school. During a myelogram to assess an incidentally discovered syrinx, we found that my intracranial pressure (ICP) was more than twice the normal limit. After discussing the findings, my doctor and I decided to reinsert the VP shunt, and I underwent surgery during Thanksgiving break of my first year of medical school.  

Even with everything going on medically, I was able to lean into being a ‘typical’ medical student and formed some truly incredible friendships. That support network was instrumental in helping me get through the rest of my schooling and everything that came with it. I also found an odd solace in balancing the stress of my medical issues with the stress of medical school; each would inevitably distract me from the other. 

Because of my continued symptoms, my neurosurgeon and I decided to attempt a posterior fossa debridement to remove some of the scar tissue from my aneurysm rupture, as well as an MRI-incompatible aneurysm clip. I stubbornly scheduled the surgery during the break between my preclinical courses and the beginning of my clinical rotations, thinking I could bounce back and start my rotations in stride. 

When I awoke from that surgery, however, I couldn’t feel the entire right side of my body. While I was in the post-anesthesia care unit (PACU), the nurses placed a pain-pump button in my right hand. As I regained consciousness, I asked myself why they would put that button in “someone else’s hand”. A bleed during surgery, also known as a perioperative hemorrhage, had caused a stroke within my brainstem; this left me with permanent loss of feeling and dexterity in my right arm. Up to this point, I was right-handed.  

Over the next year, I underwent intensive physical therapy (PT) and occupational therapy (OT) to regain as much function as possible, while simultaneously learning how to live left-handed — writing, typing, and even using surgical instruments. I quickly learned that surgical instruments are designed almost exclusively for right-handed use. 

After about a year of rehabilitation, I regained enough function to return to medical school for my clinical rotations, including several surgical rotations. Over the next few years, I continued to have hydrocephalus-related complications and was a ‘regular’ at the University of Chicago emergency department (ED). I became known for studying textbooks while sitting in a gown on a gurney. 

During this time, I became very close to my neurosurgeon, Dr. Frim, and his residents. I gained an incredible amount of useful, real-world knowledge from this team that would ultimately mold the rest of my professional career. Around the same time, after consulting my medical genetics professor, we were able to identify the underlying cause of many of my medical challenges: a mutation in my FBN1 gene. This mutation was responsible for my aneurysm, broken bones, severe scoliosis, and a myriad of other ailments.  

In total, I underwent 20 surgeries during medical school. Several were secondary to shunt malfunctions, including one that forced me to withdraw from the 2016 Match Program. Despite these setbacks, I managed to earn my Doctor of Medicine (MD) degree.  

Serendipitously, I started teaching clinical medicine to medical students throughout their preclinical courses at my ‘alma mater’ campus, initially intending this to be a temporary “gap-year” position. After a few weeks on the job, I realized how much genuine joy I found in engaging with students and exchanging knowledge, which led me to consider pursuing a career in academic medicine.  

While it took some time to adjust, I came to see that my experiences as a lifelong patient uniquely positioned me to help better inform and shape future generations of physicians. Since then, I’ve secured a position as a Lecturer of Clinical Medicine, earned a Master of Science in Education (MSEd) degree, and am currently being promoted to Assistant Professor. Along the way, I’ve also developed relationships with hydrocephalus researchers both within my institution and nationally through the Hydrocephalus Association (HA). 

To date, I’ve undergone 64 various surgeries, with no clear end in sight. But honestly, the response I received after the Intergenerational Panel at HA’s 2024 National Conference on Hydrocephalus, HA CONNECT, in Tampa, FL, made me feel that all of the suffering has been worth it if it means that I can genuinely make a positive impact on individuals facing similar circumstances.  

The individuals and this sentiment have given me immeasurable inspiration to keep on waking up every morning and fighting the proverbial fight. This realization has motivated me to keep striving towards my own personal goals and to encourage each of my peers to do the same. We have hydrocephalus —it doesn’t have us. 

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

My name is Sophia Rose. I am 27 years old, and I was diagnosed with hydrocephalus after I was born due to a hemorrhagic stroke. I had my first ventriculoperitoneal (VP) shunt placed at three weeks old and have had only one revision, at the age of nine.

As a child, I also had a seizure disorder, which I have since outgrown. Due to my hydrocephalus, I also have cerebral palsy (CP). For years, I wore braces on my feet and attended physical therapy (PT).  

Inspired by my childhood experiences, I decided to learn more about health and wellness so I could help others with similar or different conditions. I earned a bachelor’s degree in Health and Nutrition from Arizona State University and obtained multiple certifications in personal training. After completing my studies, I launched my own business and opened a personal training gym in Tuckahoe, NY called SRG FITNESS. I am also the author of “Strength Resilience, Growth: How I Defied Physical and Mental Limitations and Took Control of My Future,” where I share my journey growing up with these health conditions.

At 15 years old, I was also diagnosed with polycystic ovarian syndrome (PCOS). My doctors explained that my PCOS was caused by the placement of my shunt. It puts pressure on my pituitary gland and hypothalamus, which has led to significant hormone imbalances. Over the years, my PCOS has worsened, and later I found out I also have endometriosis. 

Years of hormonal imbalances have affected many areas of my body, causing symptoms such as hair-loss and severe joint pain.  

Along with hormonal imbalances, I have developed small intestinal bacterial overgrowth (SIBO), a chronic condition in which an excess of harmful bacteria grows in the small intestine. As a result, I struggle daily with excessive bloating and stomach distention. No matter what or how healthy I eat, my stomach bloats so big that it becomes hard to breathe, and my stomach looks like that of someone who is nine months pregnant. I experience constant pain, weight gain due to inflammation, bloat, and water retention, even though I’m unable to eat much. These ongoing symptoms also take a toll on my mental health, contributing to anxiety and depression. 

I share my story in hopes of helping others living with hydrocephalus, PCOS, endometriosis, SIBO, or any other condition they may be facing. I feel fortunate enough to be able to work with clients who have a wide range of health challenges and encourage them to keep fighting and believing in their strength. 

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

By: Gaelle

My name is Gaelle, and I was born with hydrocephalus. I want to share my journey to inspire others living with this condition.

From the day I was born, my life began with a challenge that would shape my entire journey — hydrocephalus, also known as “water in the brain.” It’s a condition that occurs when cerebrospinal fluid (CSF) builds up within the brain’s ventricles, causing increased pressure. Treatment almost always requires brain surgery to insert a shunt or perform an endoscopic third ventriculostomy (ETV), to divert the fluid to another part of the body where it can be absorbed.

I underwent my first ventriculoperitoneal (VP) shunt surgery as an infant in Haiti. The procedure was performed by Dr. Ariel Henry, who at the time was a neurosurgeon and later became the Prime Minister of Haiti. I am deeply grateful for Dr. Henry and the entire medical team that continues to monitor my health today.

It’s also important to me to recognize the pioneers whose innovations made my surgeries possible. Engineer, John W. Holter, developed the first practical silicone one-way valve—known as the Holter valve—which became the foundation of the modern shunt system. Inspired by his son, Casey Holter, who was born with hydrocephalus, John Holter collaborated with Dr. Eugene Spitz at the Children’s Hospital of Philadelphia to successfully create a shunt that diverts the fluid from the brain to the abdomen. This groundbreaking invention in the early 1950s revolutionized the treatment of hydrocephalus and has saved millions of lives worldwide.

Years later, I faced another turning point in my journey. During a hospitalization in Florida for kidney failure, I underwent my second shunt surgery. It was a difficult time, both physically and emotionally, but it reminded me of how fragile—yet resilient—the human body can be.

Today, I’m cared for by a team of doctors, including a neurologist who monitors my shunt to ensure it’s working properly—something I’ve only recently learned to truly appreciate.

Throughout my life, I’ve spent countless hours in emergency rooms (ERs), each visit felt like another chapter in my story. There were times I missed birthdays, holidays, and celebrations, but I’ve come to understand that even in those moments, there’s purpose in the struggle. My journey taught me compassion, patience, and gratitude for the small joys in life.

If it weren’t for the surgeries that saved my life, I wouldn’t have been able to experience some of the things I’m most proud of, like attending Everett High School, publishing my first medical article for Boston Medical’s official Instagram page and the National Kidney Foundation website, and teaching others about urinary health through my WhatsApp group.

Hydrocephalus has shown me that strength isn’t about avoiding pain—it’s about growing through it. My experience has inspired me to serve as a representative, advisor, and mentor for children with disabilities, sharing my story to encourage others who are living with chronic health challenges.

I’ve learned that life with hydrocephalus may be unpredictable, but it’s also full of hope and purpose. Each surgery, hospital visit, and challenge has shaped who I am today—someone who believes that healing begins with knowledge, community, and courage.

I am grateful for every doctor who helped me, for every moment of recovery, for the innovators who made this technology possible, and for the faith that kept me standing. Hydrocephalus is not the end of my story —it’s the beginning of my purpose: to help others live with strength and hope.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

As soon as I was able to travel, I flew home to Phoenix, AZ, and went right from the airport to my primary care physician’s (PCP) office. After examining me, he diagnosed me with valley fever meningitis and prescribed medication. It was at this time that I applied for disability due to the complications.

During this time, I went through many emergency room (ER) visits, hospital stays, and spinal taps. I then began having problems with my gait. I would be walking along when suddenly one foot would feel like it was stuck to the ground, and I would fall.

My PCP ordered a CT scan, an MRI, and another spinal tap. The MRI showed increased fluid in the ventricles of my brain. I was admitted to John C Lincoln Medical Center, and the next day, I was transferred to Barrow’s Neurological Institute, where they immediately performed ventriculoperitoneal (VP) shunt surgery.

After surgery, I spent five weeks in the intensive care unit (ICU) before being moved to a regular room.

Once I was ready to leave the hospital, I was sent to a skilled nursing facility, where I worked with a therapist for one hour a day over the course of a week. From there, I continued my recovery at Encompass, a rehabilitation hospital, three days a week.

After spending a year paralyzed from the neck down, I’m able to use my left arm to wash my face and feed myself. Through many physical therapy (PT) and occupational therapy (OT) sessions, I have regained the ability to walk with some assistance.

Today, I enjoy working with students preparing for careers in PT and OT, spending time in the classroom. I also give back to the community through fundraising, serving on the men’s spinal cord injury group, and participating on the advisory board for my insurance company.

I feel very fortunate to have the love and support of my family and friends, especially my husband, who is also my full-time caregiver. Without his support, none of this would be possible.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

During this surgery, a new valve was placed at the back of my head. My neurosurgeon explained that this location would make future shunt revisions easier. Unfortunately, more revisions followed. A year and a half later, I took a fall that I do not remember, which marked the start of a series of brain surgeries, all during my freshman year of high school.

Initially, the fall was diagnosed as a concussion. But four months later, I began experiencing persistent headaches that no medication could relieve. Concerned, my parents took me back to the hospital. Scans revealed my shunt wasn’t working again, and I underwent another shunt revision. Although I sensed something was still wrong afterward, I did not speak up for myself. If you ever find yourself in a similar situation, I encourage you to express your concerns with your loved ones and medical team.

I was released from the hospital, but I only wanted to sleep. This worried my parents, so they took me back to the hospital, and tests confirmed the shunt was failing once again. This led to a full shunt replacement. Initially, the surgery resolved my symptoms; however, on my first day back at school, I felt a pop and knew something was wrong.  Little did I know I had popped my stitches, resulting in an infection that kept me in the hospital for a week and took a full month to fully resolve.

Just three months later, I began facing symptoms again —constant headaches and extreme fatigue. At first, tests showed that my shunt was functioning, and I was sent home. But my condition worsened, and I began losing more of my vision. My parents rushed me back to the hospital, and this time, my neurosurgeon personally reviewed my scans. Seeing how lethargic I was, he performed a shunt tap. Instead of cerebrospinal fluid (CSF), the shunt tap revealed blood, confirming the shunt was not working, and I was scheduled for another surgery. During this revision, only the valve was replaced. Today, I can happily say that I have not needed a shunt revision in 15 years.

The summer before my senior year of high school, I began searching for college scholarships and discovered the Hydrocephalus Association’s Scholarship Program. Inspired by my own journey, I applied during the 2013 cycle and was thrilled to be awarded a scholarship. The scholarship helped me afford community college and later transfer to California State University Long Beach (CSULB), where I earned a Bachelor’s degree in Liberal Studies with an emphasis in Human Development.

While at CSULB, I worked in the disability services office, assisting blind and low-vision students. One of my responsibilities was training students to use screen readers. I quickly noticed that many didn’t know how to navigate everyday objects like a keyboard, revealing a gap in their education. This experience inspired me to pursue a career in teaching students with visual impairments.

I enrolled in the Teacher of the Visually Impaired program at San Francisco State University. Traveling frequently between Los Angeles and San Francisco made me realize I needed better mobility support, which led me to apply for my first guide dog in April 2022. That decision changed my life. My guide dog, Eve, has helped me travel confidently, attend meetings across the country, and even guided me across the stage to receive my master’s degree.

I’m now in the final stages of earning my credential to teach students with visual impairments, with plans to complete it this fall.

If there’s one message I want to leave you with, it’s this: never give up, no matter how many obstacles hydrocephalus may place in your path. For those interested in following my ongoing journey with multiple disabilities and guide dog adventures, feel free to visit my blog, Adventures with Eve.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

At three months of age, my parents noticed further symptoms like throwing up and missing milestones, so they visited my pediatrician. He sent me to the hospital, suspecting hydrocephalus. The hospital confirmed his diagnosis, and I underwent my first ventriculoperitoneal (VP) shunt surgery that same day.

My parents, who had recently immigrated from Kasachstan at the time, could barely understand my German doctor and were terrified when they heard sentences like: “We don’t know if your daughter will ever walk on her own”, “She will most likely be mentally impaired,” and “Be ready to be caretakers her whole life”.

After surgery, my symptoms faded quickly, and I started hitting milestones, like holding up my head and eventually walking on my own. When I started school, I showed no mental challenges and was always at the top of my class. Despite multiple revisions, caused by everything from a clogged shunt to a malfunctioning valve, I was able to recover quickly and was never in the hospital for long.

That changed at age 11.

During a routine EEG at age nine, my pediatric neurologist noticed “spike waves,” which suggested I might have an epileptic condition. Since I hadn’t experienced any seizures, he decided to do yearly follow-up visits instead of treatment.

Two years later, I remember watching a YouTube video in the evening before falling asleep. When I woke up, I was lying on the floor in my bedroom with my crying parents next to me, on the phone with 911. In the ambulance, I learned what happened –I had a seizure.

Around 4:00 a.m., my parents heard strange breathing noises coming from my bedroom. When they checked on me, they found me convulsing on my bed, gasping for air. My dad laid me on the ground and tried giving me rescue breaths, while my mom called 911. Two minutes later, I regained consciousness–confused and scared.

At the children’s hospital, doctors ran a series of tests that showed nothing new, apart from the familiar spike waves. Since they couldn’t reproduce the seizure, and I didn’t have another one, I was discharged without a clear explanation and without medication. What I was given were restrictions: no swimming, no bike riding, and no activities that could end in disaster if another seizure struck.

This was the first time I truly felt impaired by my health, and I couldn’t help but wonder if the hydrocephalus had something to do with it. I haven’t experienced a seizure since that day.

Over the next years, I was thriving despite all of the revisions and began to dream about the future. I spent so much time with doctors that I wanted to be like them–some sort of superhero, which is how I felt about my doctors as a child—and help other patients.

When I wasn’t accepted into medical school in Germany, I applied for the entry exam in Austria and passed on my first try. Despite my parents’ fears about whether I could manage my health problems on my own, I moved out at age 18 to go live in another country.

I’m 21 now and have had 11 surgeries. I am in my third year of medical school and thriving! A year ago, I moved in with my boyfriend of six years, who also relocated to Austria. Since then, I’ve had one revision, but thanks to the fantastic care of the local neurosurgery department and my boyfriend’s constant support, I was able to recover quickly.
My current plan is to pursue residency in either neurology or neurosurgery, and I feel confident that I can make it.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

It was the summer of 2017 when my optometrist saw pressure on my optic nerve during a routine exam. But little did I know, this was only the beginning of my story.  My mom received a referral from my ophthalmologist to get an MRI. I wasn’t expecting anything to come back negatively. On August 23, 2017, I saw my mom cry right in front of me for the first time. The MRI showed a tumor inside my brain, and I was diagnosed with obstructive hydrocephalus. At the time, I was too young to comprehend what a brain tumor was, and everything was happening so quickly. I remember getting escorted to the hospital via ambulance and the EMTs laying me down on the stretcher. We were told all of the ventricles in my brain were filled with fluid. That night, nurses, technicians, and doctors were poking me, asking me questions, making sure I stayed still. A few days later, I had my first surgery for an endoscopic third ventriculostomy (ETV). The surgery went well, and I went back to school soon after. The only concern my parents had was the fact that my ventricles remained enlarged.

I continued my life as normally as I could until April 2021, when the ETV failed. My mom noticed I was not responding to her when she would talk to me, which was a concern. So, she took me to Seattle Children’s Hospital to get checked out. Within 12 hours, I had surgery to place an external ventricular drain (EVD), then back to the O.R. to put in a programmable ventriculoperitoneal (VP) shunt. It took a month to recover, and I missed the last full month of school. My mom had to take me to the Emergency Room (ER) 9 times in the 17 months that followed. I also had my first seizure.

On October 1, 2022, my mom was really worried because I wasn’t remembering things, so she took me to the ER again the next day. I was told the shunt had failed and I needed a shunt revision. The next day, the MRI showed that the ventricles were still filled with fluid. I was told I would now have to have an EVD for several weeks. The next four weeks were horrific. I was bedridden and could not move my head unless the nurse came in to turn off the drain. My mom stayed with me the whole time. Once the neurosurgeon determined that my ventricles were in compliance, I had the drain removed and a new VP shunt put in. I was able to go back to school 8 days later for half of the day.

In April of 2024, I had another seizure. This time it was at school during rehearsal for a musical. The director called 911, so a fire truck and ambulance came to the school. I fear that I will have a lot more seizures and surgeries to manage my hydrocephalus as I get older. But I continue to live my life to the fullest. After I graduate from high school, I am hoping to continue my dream of being an actress by attending college to get a Theater Arts Degree.

At the start of 2025, I had five seizures in four months. One happened during my graduation ceremony in front of everyone, and another while driving to school in my car. Thankfully, I was not hurt, but my car was a total loss.

This fall, my dream of going to a performing arts college is coming true. I will be getting a Bachelor of Fine Arts (BFS) degree while attending Cornish College of the Arts in September 2025. I will not let my disabilities stop me from pursuing my dream of becoming an actress!

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

My hydrocephalus story in a nutshell goes like this. I was born with hydrocephalus, the doctors later told me, but it went undetected. The only reason I discovered I had hydrocephalus was that when I was sixteen, and a freshman in high school, I decided to play football for the first time. There is and always will be hard hits, headaches, etc. from playing the game. So as I was playing, I just thought my headaches were par for the course of life as a football player, and nothing more than that. But one Saturday morning, after a Friday night game, I woke up with a minor headache. I treated it with Advil and just went about my day. However, the next two Sunday mornings I woke up with an extreme throbbing headache that lasted for a couple of hours. I’ll never forget the excruciating pain that the headache caused me. The next day, instead of going to school, my mom took me to the hospital, where they ran several tests on my head. The doctors found out the reasons for all my bad headaches. They were not because of playing football. Turns out I was living my life with hydrocephalus. Something that, again, I would have never found out had I not played football for the first time.

The doctors told me good news and bad news. The good news was that they caught it and could start monitoring me for the rest of my life, and the bad news was that I could no longer play football. It was a crazy experience that I will never forget. I don’t know the type of hydrocephalus I have, but it must be a minor case of it because the doctors told me I didn’t need surgery or a shunt since I had been living my whole life with it. The only “treatment” I get is that I have to get MRIs performed every year to monitor the pressure and to see if there are any changes. I do not have a shunt. I am blessed that the doctors caught it when they did, though.

Since my diagnosis, I strive to do as many things as I can. I am a college graduate from Hampton University. After I graduated, I became a physical education teacher at an elementary and middle school. I have been doing this job full-time for five years now. Even though hydrocephalus has limitations on certain things, I always remind myself this can’t stop me from living a prosperous and fulfilling life. I can still live out my dreams with hard work and dedication. Hydrocephalus won’t stop me!

Yes, there are certain things that hydrocephalus has stopped me from doing, like driving and playing football, but I have a good support system. There are other ways to get things done in my life, and instead of feeling sorry for myself, it just takes time to discover what my alternatives are. And that’s okay! I wouldn’t have it any other way! I love being a hydrocephalus warrior and advocate for the condition. It’s something I embrace and wear with pride!

This experience was so life-changing that I went on to write a book about it.  The book is called My Football Experience, and can be purchased on wesleyeggleston.com.

Two Decades After Diagnosis: Living Proudly With Hydrocephalus

I am now thirty-three, and since my diagnosis, I have had an awakening. Now that I know what I know, I can live more freely, with understanding.

A huge example of this is my inability to drive. Once I read, and reread, and read again, about the difficulties people like me face with driving, such as stopping and starting or feeling anxious behind the wheel, I wasn’t mad at myself.. (All of this is outlined in a blog, From 0 to 60: Driving and Hydrocephalus, written by an adult living with hydrocephalus.

Instead of dwelling on it, I adapted. I found other means of transportation and surrounded myself with people who understand my situation.  Unfortunately, I still have many near, far, and in between, who still don’t understand my shortcomings when it comes to driving.

There’s also the aspect of being one of the people with hydrocephalus who is not shunted.

As a young adult who likes to go out and have a good time, whether it’s dancing or just moving around, the random stumble I tend to have can cause people to stop and stare and make me feel as if the world came to a standstill.

It can be perplexing at times, since people don’t understand what they just witnessed. I always have to reassure people that I’m okay. I don’t like to be “babied” about my condition, but I do appreciate it when others look out for me.

Since my diagnosis, hydrocephalus has redirected me; it hasn’t stopped me! That’s what I love to tell people. In fact, so much has come from finding out that I have it.

I can honestly go on and on, but all that to say this: despite the many things hydrocephalus has limited me from doing, I’ve still gone on to live a full and successful life.

I am a proud graduate of Hampton University, I’ve built a successful 16-year career as a teacher, and I am happily married to my wife, who understands and respects my limits that come with my hydrocephalus journey.

I’m also the author of the book My Football Story, where I share how it all happened and what it was like to learn about my diagnosis.

Even through all the hardships, I’ve come to see that I am who I am now because I truly know myself. Now and forever, I am a hydrocephalus warrior!

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

I was born in December of 1970. Depending on whose recollection you believe, I was either two months early (as I’ve been told most of my life) or, as my dad told the neurosurgeon in 1993, maybe only two weeks early. Either way, I was small enough to have a Tiny Tears doll pattern for a christening gown — which, sadly, was lost in Katrina.

I’m not sure what triggered people to notice that something was “off”, but someone did, and I had an emergency christening, followed by the first of four brain surgeries within six months in January 1971. Two revisions later, I had my fourth brain surgery in May of 1971. Either the shunt itself (as we believed for years) or a stroke around that same time caused the left side of my body to stop working properly, leading to hemiparesis and serious strabismus in the left eye. Had it not been for that, I might have been left-handed, as I no longer favored my left hand. That shunt lasted what seemed forever. After 12 years without brain surgery, the doctor essentially told me I was “cured” and to call him if I developed any issues.  

I graduated from Tulane University in three years with a double bachelor’s degree in 1992, got married in August of 1993, and started graduate school at the University of Chicago in October 1993, with intentions of getting a master’s degree. But then I started having beastly headaches, and the day I began throwing up, Van dragged me to the student clinic.

They sent me straight to the neurosurgeon. Talking with the doctor, we realized my balance had been off long before I started experiencing headaches and vomiting. My third shunt replacement in 23 years happened just before Thanksgiving. As far as they could figure, my brain had compensated: my ventricles had expanded to a certain point, so the spinal fluid was able to absorb just enough, allowing me to have no issues for 22 years. Although I didn’t have any brain surgeries from 1971 to 1993, I did undergo the first of two strabismus surgeries on my left eye in 1973, with the second in 2023. Additionally, I had five ankle surgeries between 1977 and 1984 to correct my turned-in left foot, along with many physical therapy sessions through these years. 

In 1996, the doctors had to do another revision because the catheter in my brain had become clogged. In 1998, they determined I was a good candidate for an endoscopic third ventriculostomy (ETV), hoping that I wouldn’t need the shunt anymore.  Six weeks later, while sitting at the computer, I suddenly experienced a horrendous headache that travelled down my spine. My husband and I quickly headed back to the ER for evaluation. Needless to say, I ended up with another shunt. 

That shunt lasted 18 years, and might’ve lasted longer, but I fell down a flight of stairs at Slidell Little Theater, causing a hematoma and a concussion, among other injuries. My neurosurgeon drained the hematoma, and since I was still complaining about headaches, he performed an intracranial pressure (ICP) monitor procedure, which yielded inconclusive results. However, between 2014 and 2016, though, two other doctors discovered that the proximal catheter was not in the ventricle, but in brain matter. 

The summer of 2016 was horrible. The procedure to move the catheter resulted in a pseudomonas infection, which led to three weeks in the ICU. Afterward, a course of home antibiotics caused pulmonary embolisms, putting me out of work for nearly a year. That shunt, despite being on the FDA recall list, lasted until the summer of 2022, when I had not one, not two, but three more brain surgeries to try different shunts. In 2024, my Codman Certas valve stopped functioning properly, requiring another revision.

In the spring of 2019, I had a procedure to fuse the C4-C6 vertebrae. Then, in the summer of 2021, I underwent a lumbar spinal fusion—fusing L4-L6, inserting the spacer between L4 & L5, and de-tethering my spinal cord. For those who’ve lost count, that’s 18 brain surgeries —31 surgeries total, counting a distal shunt revision, deviated septum repair, and the wisdom tooth removal. 

Throughout all of this, I’ve managed to hold down full-time employment, get my master’s degree, direct four plays, and act as treasurer (now president) for the board of one of our community theaters. 

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.