Katherine Long’s Story

Awareness Saves Lives, and Insurance Coverage Needs to Change 

My name is Katherine Long, and I am a 40-year-old tech sales professional in New York City. Indeed, I would not be alive and well today if it were not for the Brain Aneurysm Foundation’s Annual TeamCindy 5K Run for Research.  I am equally sure that more people need to learn about the sometimes-subtle symptoms of brain aneurysms so they can receive treatment before it is too late, and that insurance companies must change their policies to cover the costs of diagnosis for this often silent and fatal condition.

In 2014, I learned about the TeamCindy 5K Run from Cindy’s sister and my friend, Lauren. Cindy Lynn Sherwin, a 33-year-old marathoner and triathlete died suddenly of a ruptured brain aneurysm at the age of 33.

Though my passion is cycling, to support Lauren I attended and ran in the fundraising event, held in New York City. It is where I first learned about brain aneurysms from experts, affected patients, and family members.  I learned that while brain aneurysms often present as the worst headache of your life, the symptoms can also be far more subtle.  I also discovered that if diagnosed and treated early, ruptures can be prevented and lives saved.

As I was running the 5K course that day, I, then 35, thought about the severe migraines I had been experiencing since I was 18. I also thought about the strange tingling and slight drooping in my face that I had experienced over the previous year that had sent me to neurologists, who either said nothing is wrong with me or diagnosed me following MRIs with atypical trigeminal neuralgia.  Even before I crossed the finish line, I knew I needed the MRA the doctors were speaking about at the beginning of the race.  I was certain that something else was the cause of my symptoms and that I needed to find out what it was.

Fortunately, my primary care physician Dr. Edward Merker listened to me and ordered an MRA (magnetic resonance angiography), which revealed that I had a brain aneurysm.  With Lauren’s help and the help of another friend whose uncle ran diagnostics for aneurysms, I was ultimately referred to Dr. William Bank and Dr. Andrew Stemer, MD, a vascular neurologist, and neurointerventional radiologist at Medstar Georgetown in Washington, D.C.  In June 2015, Dr. Stemer used an endovascular technique and the Pipeline embolization device to repair my aneurysm.  The device directs blood flow past the aneurysm, which causes clotting and prevents it from expanding or rupturing.  It caused the aneurysm to shrink over time and ultimately disappear.

After the surgery, Dr. Stemer told me he was happy that I had had the procedure as the aneurysm was in a fatal location and was growing. It had grown to the point where I wouldn’t have had a choice in having the procedure or not, and at some point, it would have by all accounts ruptured and taken my life.  Dr. Stemer encouraged the women in my family to think about being tested.  After the procedure my cousin and my mother’s godchild, Monique, a married mom who lived in D.C., had me stay at her home to recuperate.

My story might have ended happily there.  But, tragically, that was not to be.  During my recuperation, Monique revealed that she had been suffering from severe headaches and had been trying, unsuccessfully, to get her insurance to cover some additional testing to determine the cause.  I, citing my situation, urged her to get tested, but Monique felt her life was not as stressful as mine, and up until my aneurysm, there were no other known cases in our family. She felt mine could have been from an accident I sustained in 2013 and was resigned to the fact that her insurance would not cover further testing and that it might not be that serious.

Almost a year after my procedure, in May 2016, Monique collapsed at home and was rushed to the hospital, unconscious, where she died from a ruptured brain aneurysm.  Monique was only 48 years old, and her son, her only child, was getting married in just three months.

Since Monique’s tragic death, my mother and one of my aunts have been diagnosed with brain aneurysms.  Because two family members had been affected — an arbitrary benchmark used by many insurance companies and doctors based on outdated research — their diagnostic testing was covered by insurance.  Both are being regularly monitored.

Although I am active and healthy, and my aneurysm is gone, Monique’s unnecessary and untimely death is still heartbreaking.  It has left me passionate about raising awareness and working toward changing insurance requirements for diagnostic testing.  My cousin Jennifer Bakale, one of Monique’s sisters and I shared our experiences at the BAF Advocacy Day on Capitol Hill last year.  It was emotionally challenging for both of us, though essential to do to help others and perhaps spare another family from suffering such a terrible and needless tragedy.

Monique should have been able to celebrate her son’s wedding, and she should still be with us to share in family memories.  We are on the right track with awareness; it worked for me. We now need policies to get up to speed.  I am forever grateful to TeamCindy, Cindy herself, Lauren, and her mother, Elaine, for the work they are doing to raise awareness and to support research that will help ensure that people have access to the tests and information needed to receive lifesaving treatment.  They saved my life, now let’s save others.