Kyle

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. 

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