November 2020 Heidi McCausland

In October 2006: I suffered a ruptured brain aneurysm. That morning, my cats had woken me up at 4:30. I was not a happy camper because it was the busiest and most stressful time of year for me at work and sleep was highly desired. I got up to sort the cats out. As I lay back down in bed, a sudden – and very, very sharp – pain pierced my head and neck.

I attempted to get comfortable in bed, but the pain was too intense. So, I got out of bed and attempted to stand, but my legs were very unstable. My heart raced and I started to sweat profusely. I tried to walk and fell to my knees at one point. I regained my balance. As my heart continued to race, I woke up my husband Dave with these simple words, my speech slurred: “Something is wrong with me.” Because my heart was racing so badly I assumed it was a heart issue, but as Dave called 911 both of my arms went numb.

Prior to this day, I had suffered from migraines since 1976. In the moments leading up to my migraines, I would have vision problems and then half of my body would go numb. Literally. Half of my tongue. One side of my body. It wouldn’t last long, but I always knew what was coming as a result. However, having both arms go numb really scared me.

It took twenty minutes for the EMTs to arrive at our country house. By the time they arrived, my heart rate had stabilized, and I wasn’t as sweaty, but I certainly didn’t feel good. The EMTs took my blood pressure and asked some questions. Once my husband told them I suffer from migraines, they were dismissive and said they could transport me to the hospital “If I wanted…” Or not. The words “stroke” or “aneurysm” were never mentioned.

Because I had never experienced anything like this before (and I knew it was not a migraine due to the instant, severe pain and loss of feeling in both arms), I asked Dave to drive me to the ER. The ambulance crew left, I threw some clothes on, and we drove the fifteen minutes to the hospital. I don’t remember a lot about the trip, nor the arrival.

As we arrived, an ER doctor was just leaving the building at the end of his shift. He asked my husband what the issue was. Dave explained it and the doctor turned around and walked us into the hospital. This move may have saved my life. This doctor may have saved my life. I regret to this day never going back to find out who he was and thanking him.

Because he had just lost someone he knew the previous week to a brain aneurysm, he ordered up a CT scan where they saw the blood that had leaked from a previously undetected 11 mm (approx. 1/2”) brain aneurysm.

I had been given some medications, but I DO remember the doctor coming in and telling me I had had a ruptured brain aneurysm. I remember thinking: “Well, that’s not good.” I had only heard the word “aneurysm” a few times in my life. I knew my cousin suffered one a few years earlier; but beyond that, I wasn’t educated on what they are, how they form, treatments available, or what type of recovery should be expected.

I wasn’t flown but driven (in record time) by ambulance to Maine Medical Center. My husband followed behind in our car so that he’d have transportation once there. I can’t imagine how scary that drive must have been for him not knowing if I’d still be around once he arrived at the hospital. We live sixty miles away. I arrived in about thirty minutes with sirens blaring. I remember the cool air when I was loaded into the ambulance and how kind the gentlemen inside the ambulance were. Then I remember the cool air once I was unloaded from the ambulance, but not much else from that day.

After a series of tests, it was determined I needed an Endovascular procedure the next day. Due to the location of the aneurysm (on my left carotid artery which rests on my ocular nerve behind my left eye) the less-invasive treatment of coiling was decided upon. This procedure does not involve open brain surgery where the skull is cut open. Instead, it’s performed by an Endovascular radiologist who uses a series of x-rays during a cerebral angiogram to thread tiny, microscopic wires into the main artery via the groin, through the heart and into the brain aneurysm, where the wires coil around each other to produce a solid mass which prevents blood from entering.

I understand all of this now, but I most certainly did not comprehend how they were going to repair my brain by way of my leg. I still didn’t understand it until weeks and weeks later. The doctor had to draw me a diagram.

The procedure was successful! Sixteen shiny, new platinum wires were inserted into my brain aneurysm. I was in the ICU for a couple of days, then moved to the open neurology ward where I became quite nauseous for several days until we determined I was having a reaction to morphine. Once that was settled, I was able to get up and move around. I was very lucky that I had all my faculties, however weak and disoriented I was at times. I knew people, places, and things, but struggled with fatigue, balance, and visual disturbances would stay with me for months afterwards.

I was one of the lucky ones. After two weeks in the hospital, a few weeks of at-home nurse visits and therapy, and six months of initial recovery, I was back at work full-time. That was the following April, in 2007. Driving took some time until I felt comfortable behind the wheel and knew I could concentrate sufficiently to make the sixty-mile round trip. My husband drove me to work for a few weeks until I felt I could do it on my own. Baby steps.

Each day during my recovery was a challenge. It was frustrating not being able to do very simple things I had previously done with ease. Bending over was a struggle as the weight in my head would shift and cause pain and dizziness. On the days that I did feel good, I would take advantage and do too much. This would result in a relapse of sorts and I would struggle to just get out of bed the next day.

I had to come to grips with my limitations and mourn the old me while getting used to the new, post-aneurysm me. It was difficult and frustrating.

It wasn’t until I met other survivors online that I realized I was not alone and that my feelings and struggles were validated. This gave me some comfort. Those early months of recovery were scary and there wasn’t much assistance out there for survivors of brain aneurysms. Some of the contacts I made online back then have remained dear friends, now fourteen years later.

To keep my family and friends abreast of my recovery, I started writing a “Brain Blog” about my experience. Over the years, I have expanded and updated it to include more details about the events outlined below. (I think having my laptop in the hospital with me also provided some therapy by retraining my brain to type and use my eyes and hands in concert with one another. Any brain injury takes time to heal. In some cases, a LOT of time).

In 2008: My husband lost his 32-year old niece to a ruptured brain aneurysm three days after Christmas. Being touched by brain aneurysms again so soon after my own rupture was terribly difficult for me. Survivor’s guilt weighed heavily on my soul. Why did this young, vibrant woman (who had her whole life ahead of her) have to die, yet I’m still here? Kim was so very popular and loved by so many. Her death prompted our family to DO something about raising awareness. With the help of Kim’s close friends, the first KAT-Walk for Brain Aneurysm Awareness in Maine was started in 2009. KAT is Kim’s initials: Kimberly Ann Tudor.

In 2011: The sixteen coils that saved my life in 2006 started to compact and blood started to get back into the aneurysm. A decision was made to add more coils, and then a stent, to keep those puppies inside the aneurysm. This procedure added more “brain bling.” Now, I have twenty coils inside that original aneurysm with a stent across the neck. Thankfully, there were no complications and I had a short recovery period after both procedures (since it wasn’t a rupture situation). After some head pain and fatigue, I was back at work full-time just a week afterward.

Also, in 2011: During my annual brain exam, a second, small brain aneurysm was discovered. It was very small and didn’t appear to be at risk for rupture, so the decision was made to “watch and wait.” True, I didn’t have to endure another procedure, but there was no way of knowing if it would rupture or not while I was “waiting.” Scary. I hated that period of time.

In 2012: My sister Dori suddenly died from a ruptured brain aneurysm back in New York, leaving behind a husband and a 15-year old son. Devastating us all again. Survivor’s guilt reared its ugly head. Why did I survive when my sister, who had a son that needed her, didn’t? It was VERY difficult to see her in a coma, with a shaved head, non-responsive, assisted breathing, a drain in her skull, and lifeless in bed. The brain aneurysm had already done its damage…. she was no longer there. Heartbreaking. It could have been me, but instead it was someone I loved—again.

In 2014: After another checkup, the doctors discovered that my second, smaller aneurysm was now growing quickly; I made the decision to have it pre-emptively “clipped” which means a craniotomy was performed to remove part of my skull and a small titanium clip was placed across the neck of the aneurysm. Essentially killing it. After getting “in there” it was discovered this aneurysm was an odd, oblong shape and was at a much higher risk of rupturing with a very thin point at the tip. If I had continued with the “watch and wait” treatment, this tiny bugger could have killed me. I wanted to take care of IT before it took care of ME. Knowledge is power: I knew if I waited until it ruptured, the chances of my surviving were slimmer this time around. And if I did survive, the odds I’d have more severe deficits were also higher.

The craniotomy to repair this second aneurysm was far more invasive, but because it wasn’t a rupture, I was only in the hospital for two days. Though I certainly looked like something out of a horror movie with a very swollen, black-and-blue face and fifty-two stitches! There is still a scar where the skin was pulled back, and I have a dent on the left side of my skull where the bone flap has settled over the years. But I’m alive. Scars are our stories.

My original brain aneurysm from 2006 (twenty coils and a stent) is still causing some issues because of a “remnant” that has some blood in it around the neck. It hasn’t changed much in the last few years. We’re still monitoring it. I know it’s there. I know it’s being looked at. I know. Knowing there are still issues doesn’t make me feel better, but I wake up every morning, get out of bed, and live each day to the fullest.

After twenty coils, a stent, and a clip, I hope my “brain bling” is now complete and no further action is required. However, I continue with checkups and I continue to help raise awareness both locally and nationally where possible.

My Brain Blog, although lengthy at times and foggy due to meds, and well…brain surgery… has helped a few people deal with their own struggles along the way. And that is the reason that I keep posting, continue to reformat it, and move it around to different hosting providers. If sharing my story helps ONE person realize they should go to the ER when they experience something so unusual and painful, then I know it’s helping. If ONE person (and there have been many) sees my 2-week recovery video on YouTube when they’re about to have a craniotomy, I hope they realize it’s survivable and they will be able to function afterward. Brain aneurysms aren’t always a death sentence. If you’re aware of the symptoms and signs, you can get a scan and life-saving treatment. That way, you too can celebrate an “annie-versary”—a little something I do each October to give myself props for staying alive.

Heidi’s Brain Blog: https://heidisbrainblog.com