Katherine’s Story

My name is Katherine Long and I’m a Brain Aneurysm Survivor.  It all started around 2014. I woke up one morning, and half of my face was drooping. I was supposed to be going on a bike ride with the Medical Director of a hospital in New York. I called him immediately and said, Ed, something’s not right; my face is drooping a little. He sent me to the ER, they sent me home, they gave me steroids, and they told me to see a neurologist. That started this year-long process. I saw two different neurologists. At one point, one of the neurologists told me that I should take anticonvulsants because I had atypical signs of trigeminal neuralgia, but there were no other tests to run other than an MRI.

Amidst all this, I started an organization for kids where we taught kids how to bike, and we would take them on bike rides throughout the city. One of the women was a friend of a friend. She said, “Hey, Kat, my sister passed away several years ago. We do a race in Riverside Park every year. We need people to come. Will you just show up Saturday morning?”  When I walked into the park that morning, I started seeing all of the Brain Aneurysm Foundation logos, and they had a lot of the neurosurgeons and the Brain Aneurysm Foundation speaking about possible symptoms that you can have. The following Monday, I went back to Dr. Merker and asked if we could please run this one last test. Fast forward, we had to do the MRI (another) first for insurance reasons, then we did the MRA, and the MRA came back positive. 

When I got back to New York, I spoke with Lauren and Cindy’s mom, and Elaine encouraged me. She said, “Please, the surgeries have advanced enough. Please have the surgery while you can.” So fast forward to June of 2015, I went in for surgery. I remember waking up and having Dr. Stemmer come over and say, “I’m very glad that you did this because it had already grown to a point where you wouldn’t have had the option for surgery. It was growing below the dura in a fatal location.” My story should have ended on a very high, happy note. I want people to understand that brain aneurysms can be hereditary and that even if it’s just one person in your family who has had one, anyone in your immediate family or one-degree separation should be tested. 

My cousin Monique, who I stayed with here in DC when I had the surgery, had been having severe headaches as well. The insurance companies, I know she was having a hard time getting it approved because insurance says you need two or more people in your family. She had a severe rupture one morning in May and passed away a few hours later. I’m hopeful that we not only change the laws, increase funding, increase awareness, and let people know that with awareness, you can save lives and recover fully, but that we also look at the insurance policies.