My Survival Story

On Thanksgiving Day, 2023, we were hosting my family for the first time since we moved into our new home. Later in the evening, I was talking about some annoying headaches I had been having over the past few weeks. I had seen a doctor, and was basically told that I was stressed out, or maybe had a lingering sinus infection. But not to worry, we were headed to Mexico the Saturday after Thanksgiving, I could take that vacation to rest and reset. After all, I do have 3 children with a lot of demand. While telling this story, I was hit with the first of 3 lightning headaches that brought me to my knees. The second one, came while I was putting something away in the pantry, and my sister in-law went to get my husband. I retreated to my room and we called it a migraine. The only thing was, I had never had a migraine before, so I didn't know it wasn't what was going on, at all.

The ER
Luckily, I made it through the night at home. In the morning, I was hit with another lightning headache, by noon my vision was changing and my left eye began to slowly droop. My husband is a physician, and knew once these symptoms started, that it was time to head into the ER, this wasn't a migraine. The day after Thanksgiving is popular in the ER, there were a lot of people waiting to be seen. However, my symptoms were the most urgent so I was escorted in for a CT scan immediately. And there it was, a brain aneurysm that needed to be operated on. It was obvious that it was growing and unstable.

I don't actually remember getting the results of the CT scan, but I remember my husband telling me the brain surgery options. It was the scariest moment of my life.

So, the next morning, instead of boarding a plan to Mexico, I was in the operating room for a craniotomy. You might say bummer, to miss out on a trip to Cabo San Lucas, however, I likely wouldn't have even survived the plane ride.

The Rupture
During the craniotomy, my brain aneurysm ruptured before the surgeon could place a clip. This is called an intraoperative rupture, which is a rare complication. The ease of how it burst showed how delicate and ready to rupture it was. Luckily he was prepared, and had prepared his team in case this were to happen. They stopped the bleeding, which meant preventing the blood flow to my brain temporarily, placed the clip, and restarted blood flow within 4 minutes. But that night, they found that the blood supply didn't restart to part of my brain, causing an ischemic basal ganglia stroke, also known as a basal ganglia infarction. The basal ganglia are a group of neurons in the brain that are vital for movement, emotions, and executive functioning. We had yet to find out how it would affect me.

The Recovery
I spent the next 10 days in the hospital before I was sent home to recover. Luckily, the craniotomy and stroke didn't seem to cause any physical or memory impairments. But post-surgery recovery definitely required patience, I was slow moving, extremely fatigued, and on pain medication. We had meals delivered every night for a month, and it meant the world to our family.

After a couple months of recovery time, I started to notice some emotional and reactive disconnections. The only way I can describe it, is that my brain's pathway to laughing or smiling automatically when things were happy or funny, wasn't automatic anymore.

It was like I needed to re-train my brain that we laugh when something is funny. I had all the tools, I KNEW when something was funny, and I REMEMBERED how to laugh and smile, but the connection between the two ideas was lost.

My smiling muscles felt foreign. I also found myself to be more emotional, I cried more often, and I was more angry or frustrated than I used to be. Socially I found myself to be more awkward, or it felt that way anyways. My friends and family would say that I seemed completely normal. Which I knew was probably a true statement from their perspective, and they were also trying to be kind. To me it kind of felt dismissive, but I was able to disconnect that feeling from whoever said it. It wasn't their fault, after all the symptoms I felt were subtle to most people. I couldn't even determine which issues were related to the stroke, and which were my own insecurities responding to the differences I felt. Either way, I needed to find my way back.

The Rehab
I began to seek out some post-surgery recovery therapies, and asked for some referrals from my Neurosurgeon. Everybody I was sent to seemed to pass me along to the next person, my struggle wasn't their forte. I wasn't impaired physically, organizationally, or with memory, so they didn't know how to help me. I was often passed to mental health therapists, but it wasn't what I needed either. I wasn't sad or depressed, although I had my days, I just looked sad and depressed. Inside I felt fine, I never felt sorry for myself, but rather blessed that I had such a wonderful outcome. But, I needed a physical therapist to help rebuild the neural-pathways in my brain. The connection had been disrupted and the neurotransmitters didn't have a job, they needed to find a new route. I just needed a guide so I knew what to do and how to do it.

It became more and more clear that ongoing recovery care was going to be hard to find. I would have to figure it out on my own and let time heal. Overall, my situation is considered a success, and I count myself very blessed and lucky to have caught the aneurysm in time, pre-vacation, pre-rupture, and I had a fantastic medical team at St. Charles Medical Center in Bend, Oregon, who made everything go right, when things went wrong. I fall within the small percentage of people who live to tell the tale of surviving an intraoperative ruptured brain aneurysm. My brain aneurysm ruptured in front of my Neurosurgeon, Dr. Tien, which is right where you want to be! I've almost made a full recovery, however, while we all have the same brain structure, everyones brain is wired different. This means that the outcome following my basal ganglia stroke are different than the next person, who had the exact same type of stroke. Therefore, ongoing recovery isn't text-book, it's unique to each person. No matter how big or small your recovery seems, we all need a plan for moving forward.

When you can't find the right type of recovery plan or therapist, and it doesn't seem like there are many people who have similar stories, it can feel very lonely. While I felt great about the results of my surgery, not naturally smiling or laughing often does begin to take its toll on your mental wellness over time. This was a path I needed to deviate from, quickly. Even if I have to fake it until I made it.

In my Stroke Recovery Era
I am currently in my stroke recovery era. I am learning to live with metal plates in my head and a large scar across my scalp. It sounds simple, and vain after life saving surgery, but they barely even shaved my head for the incision, they carefully parted my hair into a braid. I appreciated the gesture when they could have just shaved it off. Being social helps my brain recognize how to react emotionally. Our brains want to mimmic the energy of those around us, and that alone is therapy. I am trying to surround myself with friends, exercise when I have the motivation, stretch my creative muscles, and do what I can to motivate others who might have a similar brain aneurysm and/or stroke survival story. I know I'm not alone, that these stories are more common than we realize, we just need to find one another and share our inspiration, motivation, and empower others to continue on their road to recovery.

 — Holly