Kaley’s Story – What to Do When Facing an Unruptured Aneurysm

January, 2017 

Today marks one year since I was diagnosed with two unruptured brain aneurysms. The diagnosis came upon my life very unexpectedly. I was 29 years old, recently married, and had only just given birth to a beautiful baby boy. Life seemed to be going perfectly. It truly is amazing how one second could change your entire outlook on life. That day was one of the most terrifying days of my life.

I received the news via email. Someone in my doctor’s office accidentally released the report to me before my doctor got the chance to call and give me the news. A report, written completely in medical terms that seemed like gibberish to me, read the words “worrisome for an aneurysm”. For those of you who are unfamiliar with the term, an aneurysm is a balloon-like swelling that results from a weakness in the wall of one of the blood vessels supplying blood to the brain. The weakness in the wall of a blood vessel could rupture at any time, unexpectedly. I have heard of aneurysms before and I knew their impact could be devastating. I was so shocked by the diagnosis and immediately wanted more information. I called my doctor’s office off the hook, but the doctor was with patients and couldn’t come to the phone right away. Since I don’t have a family member or best friend that is a neurosurgeon, I did the worst thing you could ever do – Google it. Of course, I was bombarded with horror stories of death, loss of brain function, paralysis, loss of vision and hearing, etc. I desperately wanted to find a survivor story, or reach out to someone that had been through it, but I had no success. That’s when I decided I wanted to share my story. I hope my story helps bring a little positivity or a glimmer of hope to anyone that may be experiencing a similar situation.

The Beginning

The reason I initially went for my MRA scan is because of a long family history of aneurysms. My mother had been harassing me for years to just go get checked to be safe. She lost her sister, Marie, at the young age of 31. My great-grandmother had also suffered a fatal brain aneurysm at the age of 31. We also lost two other family members over the years, and we have five family members surviving with aneurysms that are either being monitored, or that have been corrected. Since I was about to turn 30 and now had a beautiful baby boy to live for, I figured I would give my mother peace of mind and go get checked out. I had zero symptoms. I never in a million years thought there would be anything wrong with me. I calmly went for the scan and walked out of the appointment thinking nothing of it. One week later, my whole world was turned upside-down. I found out I have two brain aneurysms; one aneurysm measuring 2mm is located on my carotid artery and the second aneurysm measuring 4mm is located on my ophthalmic artery. I only shared the news of my diagnosis with close family and friends. I didn’t have enough answers myself, to answer anyone else’s difficult questions. Plus, I didn’t really want that negative attention surrounding me. Although this was a difficult thing to keep to myself some days, I’m glad I didn’t share my news. It made it much easier to get through my day to day routine without the constant reminder of my worries. I can’t imagine what it would have been like if people were constantly asking me how I was feeling or if they were taking pity on me for my circumstances. When most of the people in your world think everything in your life is fine, it makes pretending that everything in your life is fine pretty easy.

A Second Opinion

After a few weeks of letting the news process, I decided to go out of town to the Penn Medicine Department of Neurosurgery for a second opinion. Known for being one of the best neurosurgery programs in the country, I knew I was in good hands. Not only were their doctors phenomenal, but they also had top of the line imaging equipment that we didn’t have at home. I had the opportunity to meet with Dr. Eric Zager. Again, I turned to the most reliable source I knew – Google. After thoroughly investigating Dr. Zager, I realized just how qualified he was; with multiple publications and recognitions, I decided to hear him out. After speaking at length about my two aneurysms, he explained that one was only measuring 2mm so we would simply monitor it because the chance of rupture was slim, but there were options for my second aneurysm and the choice was mine. The most upsetting thing about this appointment was that the choice was ultimately mine. A lot of people might be happy with that choice, but I would have preferred if he just told me, one way or another, what I had to do.

Choice 1: I could continue to monitor my aneurysms every six months for the rest of my life to see if they changed in shape or size, ultimately deciding whether or not to operate down the road. The catch with this choice was that the only baseline indication of the size of the aneurysm was the initial scan. He could not determine how fast my aneurysms had already grown, or if they would continue to grow. He also did not have a size in mind for when aneurysms are typically known to rupture. He explained how it depends more on how thin the wall of the aneurysm is, rather than the size, and you cannot determine how thin the walls are by any scan. Some aneurysms can rupture when they are as small as 2mm, and some aneurysms can grow as large as 10mm and never rupture. With my family history, this could be a risky choice.

Choice 2: The second option would be to coil the aneurysm. Coiling is a process where they insert a catheter into the femoral artery in the groin, feed the catheter up to the brain, and feed small coils into the aneurysm in order to cut off blood flow and allow the aneurysm to clot. The doctor explained that coiling is only a temporary fix and I would probably need to go back a few times in my lifetime to add more coils as the aneurysm grows or changes in shape. Also, going through the femoral artery many times could possibly damage the artery and would increase my risk of stroke or blood clots.

Choice 3: My third option would be to face this head on and go in for the surgery to correct the problem. The surgery is known as clipping. They would perform a craniotomy in order to access the aneurysm directly and place a few metal clips on the aneurysm to cut off blood flow. This would be a very invasive surgery and would involve months of recovery time with many risks involved, but would completely correct the problem and I would no longer have this ticking time bomb in my brain.

After hearing the options, I was honestly leaning toward coiling. It was much less invasive than a craniotomy and it would be a temporary fix that I could handle one step at a time. I could not believe this decision was mine to make. I decided to make my decision after Dr. Zager’s imaging team got a better look. I scheduled an angiogram for the following week. An angiogram is a procedure where they feed a small catheter through the femoral artery and guide it up to the brain. Next, they inject dye and they are able to investigate the area more closely. Since an angiogram is considered the gold standard of imaging, I would make my final decision after I had a more detailed report.

Making My Decision

Waiting for the results from the angiogram was brutal. As soon as Dr. Zager explained what they had found, it made my decision even more difficult. Although the decision was still mine, he was recommending the surgery. Due to my family history, he strongly felt that we needed to take care of the aneurysm. Unfortunately, my aneurysm happened to be at an intersection of two arteries (lucky me!), so coiling the aneurysm was no longer an option. The location of my aneurysm that he wanted to operate on was on my left ophthalmic artery, which feeds blood to my eye. If we cut off the blood flow all together, which would most likely happen with coiling, there was a great chance that I would lose all vision in my left eye. Although this sounded terrifying, it still sounded better to me than death from a rupture or cutting my skull open and going through with a brain surgery. He was very cool and collected in explaining exactly how the surgery would happen and all of the possible side effects. He was extremely confident that it would go very well, considering my age and state of well being; but he still had to explain the risks. He explained how they would make an 8-10 inch incision in my skull, almost in the shape of a headband. They would have to shave the top part of my head to make this incision (I felt terrible for being so vain, but this sounded like one of the worst parts!). They would then drill burr holes into my skull in order to remove a piece of my skull about the size of a credit card. Next, they would cut through the layers of the brain to access the aneurysm. They would place one or more clips on the aneurysm in order to cut off blood flow. Then they would stitch me back up and it would take a few months to recover. Following the surgery, possible side effects could include cognitive deficits, blindness or vision loss, deafness or hearing loss, drooping of the muscles in the face, memory loss, paralysis, or death (just to name a few). I couldn’t believe this serious decision was mine to make. All of the what-ifs that came with the surgery made a possible rupture sound not so bad. The thing that terrified me the most was that in order to save my own life – when I was feeling no symptoms and my life seemed to be going perfectly – I had to have a surgery that could leave me with lingering side effects for life. I just could not wrap my head around the fact that I had to risk possibly being blind, or not being able to read, or being deaf, when I felt like there was absolutely nothing wrong with me. Physically I felt absolutely fine, but psychologically, I was going insane. Your brain is such a vital part of your being. It terrified me to imagine the compromises to my brain that I would be risking. I consulted with my closest family and friends on their opinions. We weighed the odds the best we could and tried to take all factors into account. The support I received from my family, friends and my doctors was second to none. Ultimately, I decided I was one of the lucky ones. I considered myself extremely fortunate to have found this silent assassin before it had the opportunity to kill me. All I kept thinking about was my son having to live without his mother. Since I was given this second chance at life, with the knowledge I had, I decided to have the surgery.

The Surgery

After my decision was made, I tried to busy myself as much as possible to keep the looming surgery off of my mind. I made plans with family and friends, went on vacations, and spent as much time with my husband and son that I could. I couldn’t help but worry that it could be my last time enjoying pass-times as I had always known them. The day of the surgery I was extremely lucky to be surrounded by all of my immediate family. There were 13 of us in the waiting room. We were able to joke and laugh and distract ourselves from what was about to happen. The hospital was gracious enough to allow all 13 of us into the prep area where I waited to be taken back. Saying goodbye to my family was the hardest part. I tried my best to be strong and keep it together. I didn’t want to scare my son. The second they wheeled me away and my family was out of sight, I started to come undone. Thankfully, they allowed my mom to come with me. I had a full blown panic attack moments before they were about to wheel me in. They had to sedate me to calm me down. It was a nightmare for me, and probably even worse for my mom. For the next six hours I was completely unconscious and didn’t feel a thing as the wonderful doctors clipped my aneurysm.

Recovery in the Hospital

My husband said the first question I asked when I woke up was, “Do I look like Ronda Rousey?” He knew instantly everything was alright; at least I still had my sense of humor. I spent two days in the ICU and four days in the hospital after that. I have no memory of the ICU. They had me heavily medicated and completely out of pain. My head was wrapped in an ace bandage and I had a few drains to prevent swelling on my brain. There were 34 staples holding me together and the doctors were able to save a lot of my hair. My family said I was complaining of a headache whenever there was any loud noise, but I don’t remember that at all. I mostly slept through my entire ICU stay. I was on an IV and a catheter. Once they moved me to the hospital room, I started to come to. I was ecstatic when I realized I wasn’t deaf, blind, or paralyzed; and I still felt pretty smart! I had a slight headache here and there, but the hospital staff was wonderful and did their best to keep me out of pain. I mostly slept the first two days in the hospital room. On days three and four, they made me get up, move around, take a shower, and go to physical therapy. It was tiring at first, but it made me feel more like myself again to get up and move around. By day four I felt ready to go home. The hospital stay was getting pretty boring. Going into the surgery, I was terrified of the recovery period, but I snapped back pretty quickly. I can’t even describe how great I felt. Preparing myself for a brain surgery, I was expecting the absolute worst. Looking back now, I can’t believe how smoothly everything went. I am extremely fortunate to have wonderful in-laws that brought my son to Philadelphia with them, where they stayed for the entire week, so he could be close to me. With my in-laws watching the baby, my mom, dad, and husband could be with me the entire time.

My in-laws didn’t bring my son to see me until the sixth day in the hospital because I was afraid that I would scare him. When he came to see me he was so happy! He asked me about my boo-boo, but overall wasn’t too fazed. The only doctor’s orders for release were that I needed to rest as much as possible; I couldn’t drive, drink, or lift more than 10 pounds. The hardest part was that I couldn’t lift more than 10 pounds since I had a one year old at home to take care of. Thankfully I have an extremely supportive family to assist me with the baby.

Recovery at Home

Thankfully, I am a teacher and was able to have my surgery during the summer months that I already have scheduled off. Fortunately, my mom and dad were also able to take eight weeks off from work. My son and I moved in with my parents for two months so my husband could still go to work every day. My husband would come over every night after work and have dinner with us. It was such a tremendous help to have my mom and dad around every day to take care of me and the baby. Recovery at home involved a lot of lying around, which got pretty boring. I got fully caught up on all episodes of my favorite TV shows and I think I put a permanent dent in my parent’s couch. I was only on the heavy narcotics for about two weeks before I decided to stop and switch to Tylenol. Amazingly enough, only two weeks after a major craniotomy, Tylenol was enough! With all of the help from my family, I was easily able to follow the doctor’s orders. I had an at-home nurse come visit three times a week in the beginning and her visits became more and more spread out until I was discharged. A physical therapist came to my house weekly for about a month until I was released from his care. Finally, an occupational therapist only had to come once before he discharged me. I was slowly but surely getting back to my old ways. After a few weeks I would take a walk around the block every night after dinner with my family to try to get my endurance back up. Ten days after surgery, I had my staples removed at home by my nurse. Twelve days after my surgery, I celebrated my 30^th birthday with my family and friends. After about a month, I got up enough nerve to shower independently. After eight weeks, I was able to drive again. I had the surgery on July 18th and started back at work on September 12th. Going back to work felt great! I was so happy to have my life back. The first few weeks, I got worn out pretty easily and needed a nap every day after work. Slowly but surely, the fatigue wore off and I gained my endurance back. I never would have made it through any of this journey without the support of my family and friends. I consider myself especially lucky.

Overall Experience

If I had to do it all again, I would absolutely make the same decision to have the surgery. If you are in the same position as I was, I would recommend getting surgery in a heartbeat. I’m not going to tell you not to be scared, because there are a million things to be scared of. But, I will tell you to put your trust in your doctors. They are trained professionals and they will take great care of you. Forty percent of ruptured aneurysms result in immediate death. I try to consider myself very lucky to have found mine and to have had the power to fix my problem before it became a bigger problem.

There are many people who are diagnosed with much worse things and some people who don’t even have the opportunity to be diagnosed before their ailment destroys them. That has helped me to cope with everything I have been through. It has only been six months since my surgery and I am 100% back to normal, and have been for a few months. My endurance is back, I seldom get headaches, I can drive, I can drink, and I can lift my baby! As scary as it was going into the whole thing blindly, I couldn’t have asked for better results.

The team of doctors and nurses at Penn Neurosurgery are amazing and took wonderful care of me. The whole process was way easier than I had anticipated. Having the support of my family and friends made it effortless! Since my surgery I feel like I have been given a whole new lease on life. I appreciate everything so much more. As unfortunate as it is that I had to go through with this surgery, I feel like it has enriched my life, believe it or not! Bad days don’t really happen often for me anymore, because I know things could always be worse. I stop and marvel at the little things and try to soak up every experience, because I know that if my mom didn’t harass me to get that MRA, I might not be here for these experiences. I appreciate my family and friends more than I ever have.

Most importantly, I am eternally thankful that I will have the opportunity to be around to watch my son grow up, and he will always know the love of his mother. As negative as this experience could have been, it has helped me to become a much more positive person. And for that, I am grateful.