The story of Elizabeth
Two years ago I went in for a skull base repair surgery due to my brain herniating through my sphenoid sinuses. I remember waking up thinking everything was fine and my Mom walked in with a look on her face. She told me the doctor would need to talk to me before I left about a medication and he would go into more detail. Little did I know that moment would change my entire life. The surgeon came in to tell me I have IIH and would be on Diamox for the rest of my life. He told me IIH has no cure. I had a panic attack and I couldn’t get my heart rate to settle. I almost wasn’t allowed to go home that day because my body was in shock from the news.
Fast forward through time and I had many doctors appointments. I had so many new doctors and my life was consumed with this new reality. I felt like everyday I was learning something new. I learned I am anemic randomly and needed iron infusions. Then I found out I had PCOS. It was like my medical state was going in a downward spiral.
I had so many doctors tell me to simply get on a diet that it was discouraging. I had lost 50 pounds from when my symptoms started and I felt worse than I did at the start. I had one doctor tell me no way I had IIH due to me losing weight and not feeling better. He took me off the Diamox and then everything became much worse. That was when I learned you need to be your biggest advocate.
I followed up months later with my surgeon who was irritated I was misguided. He set me up with a new doctor who he works with frequently so I would never have that same experience again. It was a big turning point for me since this doctor had so much more experience. I was so happy to be under doctors who cared and listened.
Two years after the surgery and my medication over time stopped working. My sight started to change and my headaches started to be stronger. My images suggested my brain could possibly be herniated again.
I ended up getting a VP shunt. This has been a huge adjustment for me. It’s been a lonely experience filled with so many emotions. So many people in my life assumed I was home with friends that only one friend came to visit me. It was a very low time for me.
When I had woken up from my shunt surgery I was diagnosed with empty sella syndrome. Another rare disease that is common with IIH patients. To me this was a big shock due to the amount of times I told my doctors I think something is off with my pituitary gland. Always stick to your gut feeling!
Here I am though! 6 weeks post op and still striving to be a better version of myself. I know being a warrior isn’t always easy, but we battle through so many unknowns. We learn to accept this is our life and we have to pave the way for others to follow. I hope one day IIH has a cure and that no one has to be on this journey.