The story of Elizabeth

Idiopathic Intracranial Hypertension is a rare neurological condition that mimics a brain tumor but there is no tumor. There’s no known cause and no cure, but it is a lifetime battle that I never wish on anyone.

January of 2018 I learned my brain herniated through my skull after years and years of headaches. I was diagnosed with a rare skull defect called a Meningoencephalocele. Until this moment I had been misdiagnosed as having a migraine disorder and was dismissed when my imaging was questioned by multiple doctors for over a year. It took me being my own advocate and bringing my imaging to Boston to finally get the answers I needed.

February of 2019 I went in for surgery to have my skull repaired, polyps and a cyst removed from my sinuses, and to fix my deviated septum. It was a four hour procedure and thankfully it was successful but it was also the moment my life changed forever. The morning after surgery I woke up to the doctor breaking the news to me that I had a rare neurological disease that has no cure called Idiopathic Intracranial Hypertension. He let me know I would be on medication for the rest of my life or would need further surgery down the line. In that moment I thought how I was only in my 20’s so the rest of my life is hopefully many years. Being on a medication forever felt so set in stone.

Following this news I really didn’t tell the people in my life. I was quiet about what was going on. I was dealing with wrapping my own head around it. Still to this day I’m in denial about how serious this condition is. Many of us IIH patients know that going blind or having a stroke are two big complications with our condition. I use humor to get through the difficult times. Laughter after all is the best medicine.

Fast forward to November 2021 and I was informed my medication was no longer working. My eye sight was changing and I had a drastic change to my previous surgical site. I was going to have brain surgery in four weeks. This was a time in my life that really shook me. I had people in my life who were very supportive and some who didn’t know what to say. I spent the weeks following learning what true strength really is.

The things you learn going through vp shunt surgery recovery are priceless… VP Shunt surgery is real brain surgery. Your abdomen will hurt most of all since you legit just had your entire body pierced with a foreign object. You won’t stop touching the shunt and tubing because you are adjusting to this new body. The hair cut you will have will be a fun one. Many odd hair days are ahead! You truly learn who is by your side in life because they will be by your side through recovery. You learn your memory won’t ever be as sharp as it once was. Brain fog was real before but now it happens more often. Somedays you will forget simple things and you will be so mad at yourself. But at the end of the day you will learn you are so much stronger than you ever knew.

April of 2022 was when I started to have issues with my shunt. I had two days of headaches and my stomach started to feel like it was full when it wasn’t. I ended up needing to have emergency surgery the following day to have my entire shunt removed and I had a PICC line for two weeks with antibiotics around the clock. I learned to administer my own medication and how to flush the line. I learned more than I ever wanted to!

August of 2022 I had my second shunt placed and so far I have had great success. I get scared when I have a bad day because it brings me back to when it was infected, but I also have come to realize this disease doesn’t go away. No matter what treatment route I go I will never be “cured”.

To those of you battling IIH I recommend joining support groups. You will learn this condition impacts so much of your health and fellow patients are great resources to understanding where to start. I recommend joining research studies and being part of the cure so no one has to walk in our shoes. I am happy to be part of research at multiple hospitals in Boston.

To those of you reading this feeling bad for me I beg you to not. I don’t tell my story for pity, but I do tell it to raise awareness. If this reaches one person who didn’t know what IIH was then we are moving in a forward direction.