Image Courtesy Of Alicia Smart Written by Alicia Smart
It’s never easy opening up and sharing a story like this, but I feel it’s extremely important to do so to help people going through similar situations (as well as their caretakers). I found a lot of comfort in speaking to survivors as well as a friend who had a craniotomy for a brain tumor, in preparation for my clipping procedure for my second aneurysm earlier this year. I hope that my story will encourage people to reach out and connect with brain aneurysm survivors and caregivers for support.
On a Sunday afternoon in the winter of 2018 (I was 31 at the time), my husband, Louis, and I were getting ready to go watch the Carolina Panthers football game at a bar near our apartment in Brooklyn, NY when I collapsed and had a seizure. Luckily Louis was able to act immediately and called 911. I was rushed to Bellevue Hospital where I had a CT scan that revealed that I had suffered a ruptured brain aneurysm and subarachnoid hemorrhage. A drainage tube was then placed to prevent fluid buildup and relieve pressure on my brain. Late Sunday evening, I was transferred up the street to Tisch Hospital at NYU Langone, and into the hands of Dr. Howard Riina, a renowned neurosurgeon who has been fantastic throughout my aneurysm journey. Early Monday morning, Dr. Riina successfully performed an endovascular coiling procedure to repair the bleeding aneurysm.
Incredibly, I am told that following the surgery on Monday I progressed steadily throughout the day, gaining awareness and lucidity and proving the ability to speak and swallow and use my arms and legs.
My entire stay in the neuro ICU is hazy, but I vaguely remember coming to a few hours after my surgery and seeing my brother standing at the foot of my bed in the ICU. In that moment, I began to understand the gravity of my situation because he had travelled all the way from the UK. My amazing sister and her husband were also there and had driven through the night from Virginia and my father in law had flown up from North Carolina to support me, Louis and my mother.
The Wednesday after my coiling procedure I was scheduled for an angiogram to see if there were any abnormalities such as vasospasm (blood vessel contractions due to irritation from blood that can cause blood clots or stroke) and to make sure that the coils were successfully blocking additional leakage from the ruptured aneurysm. Unsurprisingly, the angiogram found that I was experiencing vasospasms and as a result I had to remain in the hospital to be monitored. The next 3 weeks in the ICU had their ups and downs and were full of neurological tests, physical therapy, imaging and HGTV (hello Chip and Joanna Gaines), and while I don’t remember much about my stay, I do remember the love and support I felt from the doctors, nurses and my family and friends near and far. I remember during a weekend check in, Dr. Riina encouraged me to look at each day as a day behind me, and with a touch of tough love he coaxed me forward: “now, give me a smile – a good smile, and don’t be scared. Don’t get misty-eyed on me, now. Get tough. You are doing great.” My sister Eloise and friend Ashley were instrumental in organizing a schedule to make sure that I was never alone in my hospital room, no easy feat when you are there for over 3 weeks, but something I will always remember and be extremely thankful for. Not only did I have visits from all of my dear friends in NYC, I also had my parents in law and brother and sister in law fly from North Carolina to visit and take my mind (and Louis’) off of what was going on. My friend Cassie even flew all the way from Texas to be there and spend an afternoon with me in my hospital room, even though she had 3 children under the age of 3 at home. Even though my visitors often just sat next to me in silence, as my head was constantly pounding and all I could do was close my eyes and rest, I was able to draw on the strength of my family and friends’ visits and their support while in the hospital and ever since. The day I was cleared to go home was an exciting one, but also overwhelming. My muscles had atrophied after laying in bed for 3 weeks, and the excruciating pain I felt when I tried to walk, along with severe dizziness, made the road ahead feel daunting.
The 6 months following my discharge from the hospital were difficult ones, filled with hours of physical and occupational therapy to get me back on my feet so that I could go back to work and resume a normal life. I kept a journal to remind myself that my recovery would be a marathon, not a sprint, that it wouldn’t necessarily be linear, that there would be good days and bad days and I needed to look at the long-term trajectory. If I could offer any words of advice to survivors and caretakers, I would encourage you to remember to be kind to yourself during your journey. Each experience and recovery is different, which is one of the difficulties of brain aneurysms. For me, it was incredibly difficult and scary to go from total independence to waking up in the hospital, but I am extremely lucky and thankful for the ability to make a full recovery.
The next 2.5 years of my aneurysm journey were uneventful, but we had some exciting life changes. My husband and I moved to Charlotte, NC to be closer to family, started new jobs and welcomed our daughter, Delphine, on September 19th, 2020. Then, during a routine scan in December of 2020, my doctors identified a new aneurysm. Dr. Riina presented my case at a conference where a number of doctors unanimously agreed that, given my age and history of rupture,the aneurysm should be treated via clipping surgery within 3 months. After a quick huddle with Louis and my sister, who happened to be in Charlotte visiting, we determined that we should have the surgery as soon as possible so that I could recover before my 4 month old daughter became more active and mobile. My surgery was scheduled and we had about a month to get organized and make a plan of action to leave Delphine in the care of our family. The anticipation of my clipping surgery brought on a whole new wave of anxiety, and at the frustration of my family I spent a fair amount of time consulting my good friend Google. While I admit that reading about the process of a clipping surgery and the potential risks associated with it was terrifying, I was able to find some helpful resources and support from the incrediblewomen I met through The Bee Foundation, Elizabeth Zinno, and The BAFoundation, Amanda Costanza. Elizabeth had undergone a clipping surgery for an unruptured aneurysm and Amanda was going to have another clipping surgery for a second unruptured aneurysm just a week before me. Being able to speak with them leading up to my surgery and afterward helped me work through the anxiety and dread I was feeling. It was important for me to recognize my fears and anxiety, but also to trust my medical team and know that I had a support system to lean on.
Our incredible family stepped up to the plate to care for Delphine while Louis and I were in NYC for the surgery. It was eerie being back in NYC during COVID and scary knowing that I wouldn’t have the same level of support from family and friends at Tisch Hospital because of visiting restrictions, but I was comforted knowing that I was in the hands of Dr. Riina and some of the incredible nurses that had taken care of me 3 years prior. Dr. Riina met me and Louis in the pre-op room before the surgery while we were watching a video of encouragement from friends and family that Eloise had put together. The surgery itself went very well under the skilled hands of Dr. Riina, but unfortunately I had some brain swelling and as a result don’t remember the few days after my surgery and am told I wasn’t making much sense (I didn’t know the date or where I was). Dr. Riina and his team treated the swelling with a combination of steroids and other medicine, and soon after I became more lucid. We were able to fly home to North Carolina about 10 days after my surgery.
This recovery has been difficult in different ways than my first one. The hardest part was not being able to hold Delphine for 4 weeks after I got home and having to remain sedentary. However, slowly but surely I have regained strength, and I am now back at work and raising my daughter as I continue to recover. I am extremely thankful for Dr. Riina and his staff for taking such good care of me again, and to our family and friends for all of their support.
I appreciated the opportunity to advocate for Brain Aneurysm Research and Awareness during the Brain Aneurysm Foundation’s Advocacy Day on March 23rd. If you are able and willing, please donate to the Rita Skertich Research Grant, started by Elizabeth Zinno in memory of her grandmother to fund Brain Aneurysm Research and Awareness for black and hispanic populations and women. I am extremely lucky to have been under the care of Dr. Riina and his team and I recognize that my outcome may have been much different if I hadn’t. Women and members of black and hispanic populations are 1.5 and 2 times more likely to experience an aneurysm, respectively, and it’s important for us to understand why and work toward making quality care more equitable.
I hope that my story helps to raise awareness and allows me to connect with and offer support to other survivors, caretakers, or others who have been impacted by brain aneurysms.