Brain aneurysms are an alarming medical trauma. It’s spontaneous, fatal and for those who do survive it can be cataclysmic on the brain. Some of us escape this monstrosity unscathed, others are left with motor and cognitive deficits. How many people can attest that they had knowledge of what a brain aneurysm was before they had one? I will raise my hand. I have glossed through stories of people who passed from a brain aneurysm or came across it the terminology when I would google severe migraine. There is one description that stuck out to me and I think it’s essential to know- rubber band snap. I saw, stories of people who explained it was the worst headache of their life, like a rubber band snapping. I thought to myself, how do you know what that feels like?
On January 29th, I discovered what that feeling was. It was 11 p.m. and I was getting up from the sofa to head to bed. As soon as I got up, I felt a rubber band snap toward the back of my head. Immediately I felt sharp pain shoot down my neck. I fell to the floor and grabbed my phone. For a moment, I paused thinking it was just another bad migraine and sleep it off. Suddenly, I felt sick to my stomach. I crawled to the bathroom and began to projectile vomit. I knew at this point; I was in danger. I immediately called my mom to let her know I was calling 911. My husband was home, but he is difficult to wake up. I placed the call to 911 and I felt my speech begin to slow down and slur. After I hung up with the first responders, my fight-or-flight mode kicked into high gear. I was able to get off the floor quickly and rush down the stairs to wait for the EMT to arrive. They took me to the closet hospital. I felt hazy and unhinged as they took my vitals and started an IV. The clinician walked in and said that I was probably having a bad migraine and gave me a migraine cocktail. Despite all the symptoms I was able to vocalize which are key- rubber band snap, neck pain, projectile vomiting, slurred speech, slow, it was determined that I had a migraine.
I was flustered and starting to fade into the dark. After forty minutes of no improvement and continuous vomiting, the clinician reluctantly ordered a scan. This is the point when my whole world fell apart. Even as I type this, I’m flashing back with tears surfacing. The clinician came back and said that you have blood all over your brain. They said they were going to transport me downtown to a hospital that can handle my type of situation. I started crying and looked up and asked can I die from this? The clinician was frank and said possibly. After that I don’t remember anything. When I woke up it was the next day and I was surrounded by several physicians. They informed me that I had a subarachnoid hemorrhage stroke with a ruptured brain aneurysm. Suddenly blood started rushing through my body like hot lava. I was stunned. Quickly I noticed a tube in my head draining blood into a bag. I was trembling with fear. The doctors told me that they would do an angiogram on me once the draining goes down to assess where the ruptured aneurysm is located. I was in complete shock, but I suddenly went into fight mode. One, I counted myself lucky that I didn’t die. Two, I was in the best hands with a great medical team and nurses. I knew in that moment, that if I was going to defy all odds, I had to be as strong as I could be despite how frightened I was.
After a week passed, the neurosurgeon ordered my angiogram. The results were not conclusive because drainage was still present. They wheeled me back to my room, and I started documenting everything to keep my mind working and remember what transpired day to day, whether that be pain, fear, information or how I felt. It was a good tactic, because it kept me sharp. Two days later, they wheeled me back down for another angiogram. When they stuck the IV in and began the contrast, I felt the heat come over my body. The kept going further and nothing was coming up. Finally, they went to the left side behind my head located near my eye and I went blind and paralyzed on my left side. I freaked out and couldn’t respond. The physicians came rushing in and told me that it temporary and sure enough I regained my vision and movement. My main neurosurgeon came over to me and said I have good news and bad news. The good news is that we found the rupture. The bad news is you will need a craniotomy for a clip procedure which is an eleven-hour surgery.
I can’t describe all the emotions that flooded at that moment. I decided to suppress them because I had a battle to fight. The surgery was scheduled two days later. During the waiting period, I had to get real about my situation. My doctor, who is extremely compassionate, is also brutally honest. She told me there is a possibility that I might not make it. That’s a hard thing to swallow and the second time I’ve heard that I could possibly die. I got all my information for my husband, with passwords and contacts. I knew I had to fight to live, but I also had to be prepared if I died. It was very hard, as I trembled handing over the sheet of paper.
The day of the surgery I was anxious. They kept pushing my time out further and further. Finally, the neurosurgeon walked in with her team and my heart sank. I knew it was time for them to wheel me down. I had tears pouring out as I said I love you to my husband and family, not knowing if this is the last time, I will ever see them. The hallway seemed longer this time. The anticipation was becoming too much and then the valium kicked in. By time I was in the operating room I was relaxed. They had me do a countdown and then I was knocked out for 11 hours.
When I woke up, I couldn’t open my left eye. I felt intense pain. I felt like the joker in the first Batman movie and asked for a mirror. I was horrified by my massive incision and partially shaved head. I was a monster like Frankenstein. The neurosurgeon came in and told me that my eye should open in two days and that I would be in the hospital for 2 additional weeks. It was difficult, but I stayed positive as I could. I kept myself busy with writing and talking. I knew I had to jump start my cognitive ability. I had moments of weakness where I would lash out because of my situation but for the most part I felt like a warrior. I also convinced the nurses to shave the rest of my hair, so I didn’t look like Benjamin Franklin. After 19 days in the hospital I was finally discharged. It felt so good to be back home!
My husband and I took measurements to ensure safety while I recovered. We installed Mobile Help that came with an alert bracelet, intercom, alert watch, GPS tracker, and car alert. Next, I ordered a medical bracelet with my conditions and a medical card with all the medications, allergies in case I had another issue. I developed a support system to help handle my emotions and I got more of my personal information organized just in case I had another one. I began to do research on my type of stroke and aneurysm and found out that 1/3 die, 1/3 are disabled and the other 1/3 make a good recovery. I was the lucky 1/3 of good recovery.
After adjusting for a week and feeling like I had some semblance of my life together, I woke up one morning and fell. My mother who watched me while my husband worked said that my speech was beginning to get slow again. I called the neurosurgeon’s office and left a message. After getting out of another doctor appointment, I received a call to head downtown to the ER for a CT scan. I freaked out for a second but told my mom we need to head downtown. This is during the peak of COVID19 invading the USA. The waiting room was full of people coughing and in agony. I was quickly taken back to get my scan. My neurosurgeon happened to be in the ER unit when my results came back, and she told me she had good news and bad news. Good news, they know why I fell. Bad news, I had hydrocephalus and required a second surgery the next day to place a VP shunt- which I will have for the rest of my life.
The following day I was more anxious than I was with my craniotomy. Perhaps I was more cognizant to actualize the pain I was about to endure. They wheeled me back once again and the operation took three hours. When I woke up, I was in the worse pain I have experienced. It was worse than the craniotomy which was an invasive surgery. I had a golf ball size lump (which is doesn’t go away) on the back of my head that hurt to lay on. My abdomen hurt from the incision made where the shunt drains to. That night they gave me so much medication that my vitals began to drop. My mom watched over me all night to make sure I was breathing.
When I got home, the recovery was agonizing. I will describe it as pure hell. While the pain as at a level 10, I was also going through a lot of emotional turmoil over everything. I had constant nightmares where the paramedics pronounced me dead. One of my doctors said it’s a form of PTSD. I was stuck at home with my thoughts, and unable to do much, especially since we were on lockdown. That’s when I let everything surface and I want to share some advice and knowledge.
You must be your own advocate. When you feel that something is not normal, act FAST. It’s the difference between life and death. When a physician doesn’t take it seriously, you must fight your case. Too often, people are not aware of what a brain aneurysm is or the symptoms, and then it’s too late. Education is crucial for
people to understand.
You will go through the seven stages of grief. Allow them to happen and don’t block it. Unfortunately, the stages don’t end after you reach the last one. It will loop around, however the more you deal with the stages, you build tools to help you when the arise.
For a woman, you will feel like you lost your femininity. That was hard for me. I had long blonde hair, and now I was bald with massive scars and a golf ball on the back of my head. I had to grow strength from this, however. I made sure I did everything I could to feel like a woman.
You will yo-yo back and forth between good days and bad days. You will fight to find your strength and silence your doubts and doubters. You will have to pick up the pieces of your life and reconstruct them differently, because after an aneurysm a part of you left, but a new part emerged. You will have tears that flow at any given moment.
Overall, several things transpired after my medical event. I started a blog www.brainstrokevoyage.com, as a diary of my raw emotions. It was releasing and therapeutic. I wanted others to follow my entire journey and what I’ve learned through the past seven months. I wanted people to be able to feel like they aren’t alone, with how they feel. Too often things are glossed over. Being raw is the most honest form of describing medical trauma. I’ve been able to connect with a lot of people this way, and it gave me hope, and made me feel like I had a new purpose in life since I was given a second chance.
One component that’s missing is sufficient information about brain aneurysms and research. I obsessively researched about it and didn’t find a comprehensive guide. I think it’s imperative to educate people more on this topic and the potential causes, because time is against you. They don’t know why mine happened, but at the age of 21 I started having horrible migraines. They became debilitating. I pleaded with doctors to do a CT scan, which they did, however never with contrast. My ruptured aneurysm happened to be in the exact spot of my migraines. I was also under tremendous stress around that time period and my great-aunt suffered the same issue. My neurosurgeon is unsure if it’s hereditary, so she urged family members to be checked.
I will leave you a peaceful picture of my life one month prior. On December 7th, 2019, my husband and I finally got married after ten years together. It was a beautiful wedding on the beach surrounded by family and friends. I was in such bliss and happiness feeling the warmth, hearing the waves crash and feeling the sand between my toes. I thought life was good. Suddenly that changed.
My brain aneurysm and stroke changed me. I’ve become very compassionate and want to devote the rest of my life to assist others in the same position and fight for more research and education. Always remember that tenacity is key to recovery.