In March, 2018 I made an appointment for a physical. I had just turned 40 and we had recently moved so it seemed like a good idea to get connected with a primary care practitioner. I met with a nurse practitioner named Lauren in Middlebury, Vermont. I mentioned to her that every month I would get headaches only behind my left eye. In telling her, I assumed it was hormonal and nothing more than that. She was a very thorough practitioner and delved deep into my family history where I mentioned in passing that my grandma had a brain aneurysm at age 50. I left the appointment and about 45 minutes after I got home the doctor’s office called and said that for peace of mind, Lauren would like me to have an MRI. It was scheduled 2 days from then on a Friday afternoon.
They gave me a nice fluffy pink robe to wear and the MRI went smoothly. Friday evening I got a call and before even answering I knew there was something wrong since I assumed I wouldn’t hear anything back until Monday. A very nice on call doctor at my practice told me an aneurysm was found on my left Middle Carotid Artery (MCA). She said she wanted to consult with a neurosurgeon at UVM Medical Center since she wasn’t sure if I should do anything over the weekend. She called back a little while later saying that Dr. Bruce Tranmer would see me on Monday afternoon.
My first concern and biggest concern through my whole experience was for my children who were 6 and 3 at the time. Worries started to creep in about leaving them motherless or with a mother who would have deficits. That weekend I went down the Dr. Google rabbit hole. I researched aneurysms non stop at which point I decided that surely mine would be coiled which is the newer, less invasive procedure. Admittedly, I didn’t know what to expect from UVM Medical Center. Vermont is a small state and Burlington is a small city. I wondered if I should got to Dartmouth or Boston and my family in Pittsburgh suggested I have the surgery there in my home town. I am an indecisive person by nature so I decided that I would see how the first appointment went. I decided that if the neurosurgeon was a jerk, I was ok with it as long as I trusted his skills. If he was nice, but I didn’t trust him I would go elsewhere. I didn’t consider that I could have both nice and skilled.
My husband joined me at the first appointment and at every appointment to come. Dr. Tranmer really listened to me, he was completely brilliant, and he was funny. At that very first appointment, he explained to us that my aneurysm had a very wide neck and that his suspicion was that it would need to be clipped. This would involve taking off my skull, pushing past my brain and securing a tiny titanium clip to the aneurysm. Honestly, I broke down and cried. When my husband and I got up to leave that appointment, Dr. Tranmer started to open the door for us. He stopped, closed the door again, turned and looked me in the eye and said, Elizabeth, you are going to be completely fine and you are the one that has to believe it. From that point forward I knew he was my guy and I had 100% trust in him. His words served as a life raft for me in the months to come.
He scheduled a CT Angiogram to get a better look at the aneurysm. Truthfully, I was nervous about the dye and I hate IVs but I was very fortunate to have an excellent nurse insert the IV and warn me that I would feel like I peed my pants (it really did feel that way!). The CT Angiogram went well and I had another appointment with Dr. Tranmer. It appeared that my aneurysm might have another artery growing out of it, was at the bifurcation of 2 arteries and was very wide necked. I think perhaps because of my initial meltdown, Dr. Tranmer then ordered a cerebral angiogram to get an even more detailed picture of what we were dealing with. The cerebral angiogram would involve an interventional radiologist inserting a catheter in my femoral artery near my groin and guiding it through my blood vessels to get a good look at the vessels in my brain. I was mostly sedated but aware at moments and remember fully coming to as the doctor was putting tons of pressure on my artery once the catheter was out. I had to stay in recovery for a few hours at which point Dr. Tranmer came in to tell me that the aneurysm could not be coiled and would need to be clipped. At this point, I realized it was a relief to me to have it clipped. I knew that once it was clipped I wouldn’t have to worry about it anymore and wouldn’t need to be on medicine for potentially the rest of my life like I would with coiling. I was glad that there was no other option for me and grateful that Dr. Tranmer had the skills to the clipping. I had a pretty bad reaction to the pain meds I was given and was discharged home feeling really out of sorts. It took a few days to really feel like myself again and I hadn’t expected to have so much of a recovery from the procedure.
Ultimately it would all be my decision whether to have it clipped or just wait and see. With two small kids at home, I just couldn’t not have the surgery. Already I was filled with deep fears about my aneurysm rupturing before surgery was scheduled. When I chased my kids in the backyard or picked one of them up I feared it could cause a rupture. I began having nightmares and waking up with my heart pounding, further causing me to fear that my nightmares would make it rupture! I even wrote letters for my husband, kids and parents for fear that I would leave them all behind. I made sure my 3 year who was home with me all day knew how to access my cell phone and dial 911 if needed. I was reading about the daunting statistics that 40% of people die from a ruptured aneurysm and of those that survive, 66% have some permanent deficit. While I was counting my blessings that mine was discovered, I was faced with the reality of possibility of aneurysm rupture.
My surgery was scheduled for June 6, 2018, nearly 2 months after my initial diagnosis. My parents came from Pittsburgh for the surgery and would remain for a month to help me and my kids during my recovery. My sister took off work to be able to take care of my kids and of course my husband was there every step of the way. The night before surgery I felt really good. I was joking with my family. My other sister and niece in Pittsburgh called and other family and friends called and texted. The morning of surgery I was up at 4 getting ready to go and the hardest thing of the entire ordeal was kissing my sons goodbye as they slept. For the rest of the morning though, I felt a peace that was not of this earth. There was laughter in the pre op room, I never needed any medicine to calm me down and I was able to genuinely thank everyone in the OR for dedicating the next few hours of their lives to saving mine. My family endured the harder part of the surgery in having to wait and get nervous that surgery was taking longer than expected. After about 6 hours, Dr. Tranmer informed them that the surgery went well and that I had definitely made the right decision in having the surgery now since my aneurysm was so thin he could see the blood rushing through it.
Recovery:
I woke up in the SICU and remember saying to my husband this is a 10/10 pain. But I was so grateful to be talking, to be alive and I even asked my parents if they were able to get something to eat and relax a bit. Most of the first few days are a blur. I remember my husband always at my side. I remember nurses having to constantly wake me up to do neuro checks. I remember trying to stand up for occupational therapy and throwing up, again having a bad reaction to pain meds. Once I was given a nausea patch to wear behind my ear, I was much better. I was given a series of cognitive tests to complete that let me know I was doing ok. I was moved to a regular floor and convinced my neurosurgeon to let me stay one more day. My surgery was on a Wednesday and I was released on a Saturday. The first few days at home are also a blur. I would sleep for 13 hours, wake up and eat breakfast and then immediately go back to sleep. The exhaustion was epic and incomparable to anything I had ever experienced. My husband had to help me shower the first time because it was all so exhausting. I will never forget how overwhelming it was to feel the water hit me, to breathe in the steam and to have the light on. Sounds and light were so overwhelming for awhile. I wasn’t able to comfortably wear my contacts or watch TV for about a month. My jaw was so sore I only ate soup at first because it was painful to open my mouth very far. I had 32 stitches from the middle of my forehead down to my ear. My sons were amazing at accepting what I looked like and that I was so tired. Sadly, my aunt died not long after my surgery from an aortic aneurysm. We all celebrated her by sitting outside and talking about her life. It was very hot that day and I didn’t realize how much heat would affect me post surgery. I developed a terrible headache and ended up taking pain medicines to help. I started vomiting and after consulting with the on call neurosurgeon was told to go to the ER to make sure it was nothing neurological happening. My husband endured me vomiting for the hour drive to the hospital and kept me calm the whole way. I had a CT scan performed, was given an IV for dehydration and given nausea meds. The CT showed that all was ok and I was discharged home. It was a lesson that recovery is not always linear. Even though it was a scary, uncomfortable experience, I kept saying thank you silently because this all meant that I was alive and going to be ok. I work per diem and was able to return to work 6 weeks after surgery. If I didn’t tell anyone about my surgery they never would have known I had it.
Reflection:
My story really begins with my grandma. In the early 1970s at about 50 years old, she began having double vision. She was found to have a brain aneurysm and at that time, the only technology available was to wrap the aneurysm, essentially in gauze. During the surgery, the surgeon did something that resulted in her having a droopy eye that was covered by a patch for the rest of her life. She spent a month in the hospital and her recovery at home lasted 3 months. Her recovery really lasted the rest of her life as she was often fatigued with headaches and was given such strict limitations that she was told she couldn’t even iron! My grandma died about 20 years later from cancer when I was 10 years old and I only wish she knew that her suffering was not for nothing because by virtue of what happened to her, I am convinced it led to my diagnosis. I am also struck by the importance of research. I think a lot about my grandma and how far medicine has come and how different things could have been for her. There were no brain aneurysm chat boards or personal stories shared on websites in her day. She endured it all alone and is the bravest person I know. I carry fear for my sons that they will develop an aneurysm in the future, but cling to hope that more and more advances will be made that their experience would be even easier than mine.
There is quite and emotional recovery that comes with facing a life threatening condition and going through an enormous surgery. When I was diagnosed with my aneurysm, I really clutched to reading other people’s stories, mostly notably Kaley’s story on the Bee Foundation Website. I also clung to an essay by Tony Nitti from Forbes Magazine about his experience which was very similar to mine. While Kaley talks in her story about not really having bad days anymore, I felt weighed down for a long time by survivor’s guilt. My former boss died from a brain aneurysm right as I was being diagnosed with mine. My father-in-law passed away a few months ago from a ruptured brain aneurysm. There were moments where I would cry to my husband that no one understands that none of us have enough time, that life is so short and so fragile. I also have felt self-imposed pressure that since I survived my aneurysm I need to be doing more, more, more and hope to live a life of helping others and I hope that by sharing my story I will. Gratefully, most of those heavy emotions have subsided and I’m left with a deep gratitude that this experience made me feel so connected to others. None of us are in this alone, even though it can feel that way so often and the support from family, friends and even strangers is what made my experience bearable and honestly, something I am so very grateful for. When I share my story with people, more than the details of surgery or diagnosis, I am compelled to share with them the moments of significant connection. My parents come up for surgery and stayed a month, my sister in Vermont took off countless time from work to watch my sons so my husband could go to appointments with me, my niece flew from Pittsburgh to Vermont by herself a week after surgery to help care for my sons (and more than that, overhearing her talking to my oldest son and telling him how brave he was and how proud of him she is will stay with me forever), my other sister mailed my favorite cookies, a friend drove 3 hours round trip to visit and deliver a meal, a friend visited me daily in the hospital, many care packages came from friends and family and so many people sent supportive messages that I clung to. I also think about the incredible things that meant the world to me that would go unnoticed by others… the anesthesiology resident making me laugh right before I went under, the nurses braiding my hair in the SICU and making me feel human again, the teenage boy who smiled at me in the hospital lobby when everyone else was averting their eyes from my huge incision, my brother-in-law telling me at a brain aneurysm fundraiser that he was grateful to be there in my honor instead of in memory of me, feeling humbled as I lay on the table in the OR at the room filled with people all there to save my life. I hope that by sharing my story it will bring someone peace. You are not alone. I will leave you with Dr. Tranmer’s words that you will be ok. You are the one that has to believe it.
