Sitting down to write my aneurysm story was more difficult than I thought it would be. I am always so adamant and vocal about the importance of raising awareness and letting others know that I am a survivor. But the thought of going back to that dark time in my life is a little overwhelming. But I’m ready. I’m ready because I, more than many, know the importance of raising awareness. I’m ready because if one person reads this and goes to be checked and has their life literally saved, just like I did, then it is worth it. I’m ready because I want others who are traveling the treacherous road of diagnosis/treatment/recovery to know that they are not alone.
I have an extensive family history of brain aneurysms (22 people diagnosed within 5 generations). I was scanned during my teen years after an uncle passed away from a rupture and scanned again in my early 20s after his son (my cousin) passed from a rupture. Both times my scans were normal. Those deaths saved many other lives; numerous extended family members were diagnosed with brain aneurysms and treated successfully. And then life happened. I got married, had a son, went to college, became an emergency department RN, lived my life in good health. Then in September 2016 at the age of 37 I hopped onto Facebook and scrolled until my eyes locked on my cousin Sarah’s post; her dad had not survived his aneurysm rupture in 1999 and she discussed the importance of regular screenings for our family members. Her actions and that Facebook post are why I am alive today. I talked with my nurse practitioner, she ordered the MRI/MRA, and I went during a rare week off from my job in the ER. The next morning I was called into her office and I knew then that something was wrong. She told me she had spoken with the radiologist who wanted me to come in right away to have a CTA while he was available to read it. And that I should call my husband at work so that he could go with me. My mother went too and held my hand during the CTA and when the hospital staff allowed that, I knew they all had a clue something very bad was on that scan. I was diagnosed with an 8.5mm left ICA aneurysm and an occipital lobe AVM (arteriovenous malformation) with a 5mm aneurysm within it. I was an emotional mess. The hardest thing I have ever had to do was tell my 15 year old son and try to explain to him what the coming months would hold.
I was immediately referred to a neurosurgeon about 45 minutes away from where I live. My family already knew and liked him so I felt confident he could fix all this in no time. He broke the news to me at my appointment that he would not be treating me; he said my case was too complicated and he was not comfortable doing surgery. I was devastated but that man still saved my life by referring me to a neurosurgeon (Dr. Mark Bain) 7 hours away at the Cleveland Clinic. My family and I traveled there for my first appointment and were immediately put at ease. Dr Bain was nice, personable, and confident in his plans for treatment. After an initial angiogram, my surgeries were scheduled. In November of 2016, during Thanksgiving week, I underwent a craniotomy to remove the occipital lobe AVM. Exactly 2 months later in January of 2017, I had a coiling procedure with a pipeline embolization device placement. Both surgeries were a success. In August of 2017, I went in for my post-surgical scans and was diagnosed with a 2mm PCA aneurysm that is most likely caused by all the vascular re-routing from my previous surgeries. We have continually scanned and checked on that aneurysm and it still hasn’t increased in size so I haven’t had to have treatment for it.
I am always grateful and know how blessed I am. I have had the best doctors and am so lucky to be alive today. But I want others to know that struggles are normal. I really can’t remember much about those first few months after surgery; the medications I was on, and the brain fog (neuro-fatigue), have made that time a blur. I went back to work as an emergency department RN and knew right away it wasn’t going to be a feasible option for me. My employer allowed me to go down to part-time and then a few months later I was able to transfer to another department and a desk job that I still have and enjoy to this day. It honestly took 2 years of recovery before I felt healthy and back to my normal self. I do have life-long issues that I am learning to live with. I have lost around 80% of my right-sided visual field (which is about 40% of my total visual field), I have intermittent tinnitus in both ears, I have vertigo, and occasional headaches. But I am here to say that all of that is a small price to pay to be alive. I got to be there to finish raising my son. I now get to be here to watch his daughter, my most precious first grandchild, grow up.
I wouldn’t be where I am today without my family and my extended family, my husband and my son, my in-laws, my friends, my co-workers, and my amazing and talented neurosurgeon. At times it seems unfair to have the issues that I have; but I am still, 5 years later, amazed that I am alive and here to tell all that has happened. And so, I’ll close my story with this: I have a favorite quote saved in my phone from an unknown source; its says “Life is 10% what happens to you, and 90% how you react to it.”
