Pseudotumor Cerebri Syndrome: Lily’s Story

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My name is Lily, and this is my personal story.

May 25, 2018, is a date that will live in my mind forever. On this day, I was diagnosed with pseudotumor cerebri, a rare condition of excess pressure in the brain, which causes symptoms typically produced by a brain tumor, despite the absence of one. I didn’t know much about the condition; I only knew that I felt scared and alone.

I had been seeing CHOP endocrinologist Shana McCormack, MD, MTR, for about a year for a rapid weight gain. She’s the one who saw my symptoms of dizziness, double vision, nausea, ringing in the ears, swollen fingers and toes, and weird specks in my eyesight as pointing to pseudotumor cerebri syndrome. She connected me to pediatric neuro-ophthalmologist Grant T. Liu, MD.

As they explained the details of my condition to me, I could feel my priorities and outlook on life rearrange in real time. The exact cause of the pseudotumor is unknown, but I was told that my biological makeup –– and also my weight — were contributing factors. Not much else was clear, and I was immediately filled with uncertainty; I questioned everything.

Medical treatment and lifestyle changes

I knew my doctors would manage the medical treatments I needed, but with potential complications that included risk of permanent vision loss, I realized I was responsible for making substantial lifestyle changes to ensure the longevity my doctors assured. Dr. Liu and Dr. McCormack, who are co-directors of CHOP’s Pseudotumor Cerebri Collaborative Clinic, were incredible, giving me a clear treatment plan that worked. My pseudotumor cerebri is gone, and I’m off medication. As long as I stay committed to my new healthy lifestyle, it shouldn’t come back, although I’ll continued to be monitored.

However, looking back, I realize that dealing with the emotions of the diagnosis and the responsibility of my treatment plan heightened my anxiety.

Due to the relative rarity of this diagnosis — especially in children and teens — most adolescents will never meet somebody experiencing the same situation. My goal in sharing my personal experiences is to shed light on the resources, skills and support that helped me throughout my journey in the hope it will make another patient’s journey a little easier.

What I wish I had known about pseudotumor cerebri

There are a few things, both big and small, I wish I had known before beginning treatment and changing my lifestyle to fight this condition. For starters, there would be a lot of waiting, both patiently and not so patiently. In order to rule out other possible diagnoses, including a brain tumor, I underwent a tremendous amount of testing. I — and my family — had a lot of sleepless nights as we waited for results from several vision examinations, a spinal tap and blood work.

Once the pseudotumor cerebri diagnosis was confirmed, my quest to beat this condition began. I was put on acetazolamide, a medication that supported me throughout my journey but also caused uncomfortable side effects. I was working as a camp counselor for kids at the time, and I felt dizzy and light-headed, and had tingling sensations throughout my body, ringing in my ears and loss of breath. Also, after certain physical activities, especially running, my chest would turn extremely red, and I would feel tingling. In hindsight, it might not have been the best idea to work, but it made me happy.

High school stressors

As the year went on, the side effects lessened, but other stressors appeared. Like most high school juniors, I was consumed with schoolwork and the constant tasks of college prep, ACT practice, gathering letters of recommendation, and beginning college applications. But I was simultaneously battling this condition. I was overwhelmed, anxious, afraid, tired, and most notably, alone.

When there was time to relax and hang out with friends on weekends, another stressor arose. When my friends were indulging in pizza, snacks and desserts, what would I eat? How would I turn the food down without making a scene? Would they ask questions? I was anxious and so embarrassed by my diagnosis, I made countless excuses to keep this “secret” from those around me. I took my medicine hiding in my school bathroom, made excuses for why I wasn't able to attend school when I had medical appointments, lied about having a stomach condition so my friends didn't question my eating habits, and much more.

Despite my feelings of loneliness and anxiety, there is no doubt in my mind that my experience (both the good and bad) has made me a stronger, better person. There were definitely a few elements that helped me reach the place I am in now, so I’ll share them.

Tip No. 1: not a diet, a lifestyle change

Prior to my pseudotumor cerebri diagnosis, I had tried many methods and programs to lose weight, so I felt discouraged and hopeless when I learned that to beat this, I had to get to a healthy weight. What truly helped me was not viewing my newfound eating habits as a diet, but as a lifestyle. I made sure my weight loss was done sustainably and healthily.

The key was being mindful and planning ahead. My schedule became quite structured. I started weekly meal preps, took responsibility for making my own lunches, brought healthy snacks with me to my friends’ homes, and looked over the menu before going to the restaurant if I was eating out. I cut out all drinks except for water and sparkling water and focused on eating high-protein foods and a lot of fruits and vegetables.

During treatment, I had an appointment in the Pseudotumor Cerebri Clinic with Dr. Liu and Dr. McCormack every three months, so they could monitor my progress. They gave me helpful tips and answered all my questions.

Tip No. 2: be kind to yourself

Not every day was easy, and on the hard days, I learned it was crucial to be kind to myself. I consistently maintained the attitude that my health, both physical and mental, was the most important thing. If I overindulged one day, I made a point to recognize that tomorrow would be a new day and kept my head up. I wish I had known earlier that weight loss is not linear, and that the number on the scale does not determine your worth.

In addition to changing my eating habits, I began applying healthy lifestyle changes. I gave myself daily check-ins and started meditating, reading, exercising, writing in a journal and adapting other strategies to cope with the stress — rather than turning to food for comfort. Being kind to myself and prioritizing my needs was how I succeeded. I began to lean on my friends, family, doctors, and others with whom I felt comfortable sharing my experiences and emotions.

I found ways to exercise that made me feel strong and powerful: I would use the stationary bike every day after school for 30 minutes. Exercise was once something I dreaded, but it became a stress outlet that allowed me to clear my head.

My journey unquestionably began somberly; however, I genuinely believe there is something good to be discovered in every bad situation. What was once the worst news of my life became the reason why I am the strong, healthy, independent, capable woman I am today.

Pride, hope, health

While others diagnosed with pseudotumor cerebri may react differently (including medication side effects), I hope my story shows what your journey may look like. I’m proud of the skills I gained: taking accountability for my actions, being open-minded and flexible, learning how to balance my life, acknowledging the importance of being kind to myself, and so much more.

There is hope. I am now a 19-year-old sophomore at the University of Wisconsin-Madison, majoring in psychology. I am president of my sorority. I am the happiest and healthiest I've ever been. There is no denying that this journey is hard, but you are not alone. Dr. McCormack and Dr. Liu were with me every step of the way. With a strong support system, a positive attitude, and determination, the road ahead will become clearer, and your future will be brighter than you ever could have imagined.