I was diagnosed with a 3.5 mm aneurysm on my carotid artery close to the junction of the ophthalmic artery almost three years ago. It was an incidental finding from a brain scan undertaken in search of the source of violent vomiting that had been plaguing me for years. This was no ordinary nausea – its exceptional violence incapacitated me. I retched every 20 minutes for endless hours and I would lose consciousness. Funny that something so horrible would end up saving my life.
I was 37, a recently retired professional ballet dancer. My husband, our four month old daughter and I were living in the Philippines. It felt like a nightmare – so far from home and our families – not only trying to understand what the terrifying diagnosis meant and how to handle it but also navigating the cultural communication differences in the recommendations we were given, all while caring for an infant with my husband gone for weeks at a time for work in Afghanistan. The threat of the violent vomiting attacks was ever present, and now I did not know what the attacks might mean for the aneurysm.
We decided to move back to the US to deal with my health problems. Fortunately, my husband’s work is close to Johns Hopkins and I was able to be seen there right away. I had a CT angiogram, desperately hoping for a clear cut treatment path to then materialize. But what I was told left me feeling lost. I was not a good candidate for endovascular treatment; if I opted to treat the aneurysm, clipping was the recommended route. It carried more significant risks up front but it would be the final treatment needed – provided they could reach the entire aneurysm, something the doctor said he wouldn’t know for certain until he was inside. Not comforting. Alternatively, I could just monitor the aneurysm. The doctor gave it a 50% chance of rupturing over the course of my life. He said the decision came down to my philosophy of life – which set of risks I was more comfortable accepting, but that the risks of complications from surgery was lower. The vomiting was totally unrelated, and hopefully wouldn’t affect the aneurysm.
Bewildered and terrified, we tried to plug on with life. I was leaning toward having the surgery but decided to give it a couple of months to get a bit settled, let it all sink in and hear other opinions. We were living in a hotel while looking for a place to live, considering criteria for our house hunt that I’d never imagined – not too far from a hospital, hopefully on the way to Johns Hopkins, walking distance to groceries and public transportation in case I lost vision or had other problems from the surgery or a rupture and couldn’t drive. I also wanted to nurse my baby a little longer, hoping to give her any advantage in life while I still could.
I saw doctors at another hospital. While they agreed that clipping would be better than endovascular treatment, they strongly disagreed about the risks of rupture – placing my lifetime risk of rupture at 5% instead of 50%, with the risks of the surgery being around 20%. They said if it was in their heads, or in their wives’ heads, they wouldn’t touch it – and that open brain surgery was becoming a thing of the past. The risks they enumerated with the surgery included stroke, memory loss, personality change so big I might be unable to be care for my daughter, as well as vision loss. Another doctor at another hospital also recommended monitoring, not surgery. We were more confused than ever.
I couldn’t make the decision. How do you decide to leave your baby while you are seemingly fine and submit yourself to brain surgery that could destroy your ability to care for her? But how do you take the risk of not treating it and chance rupture? To say I agonized over the situation doesn’t start to cover it. All the while I was still vomiting regularly, terrified each time that it would rupture my aneurysm or push me closer to a rupture.
Slowly things began to calm. We settled in our new house. I saw Dr. Buchholz at Hopkins who diagnosed my vomiting as Cyclical Vomiting Syndrome from Abdominal Migraines and gave me the information I needed to get the vomiting under control. I worked out regularly to try to stay healthy. Trying to work out hard enough to keep my blood pressure low but not too hard to put undue pressure on the aneurysm was a constant worry. I worried every time I carried a heavy bag of groceries or lifted my daughter. Knowing you have an aneurysm is insidious. I struggled thinking that this knowledge of how fleeting life is should be making me a better person but instead was just making me stressed and sad.
I had a scan every six months to monitor the aneurysm; the doctors said it looked unchanged and it was fine to continue to monitor it. Almost two years passed since my diagnosis. And then a random meeting changed my life. After working out one day, I overheard a lady in the locker room talking about her recent aneurysm clipping. She graciously agreed to discuss it with me. It turned out hers was in the exact same location and a similar size. It was only several months post op and she was fine apart from minor vision change! Suddenly it seemed like a real possibility – I might be able to have the surgery and come out ok. When she left I burst into tears – all of the anxiety and emotions that I tried so hard to keep at bay stirred up. Thankfully, she also told me about the BAF support group that meets at Hopkins. My husband and I went to the next meeting and found such wonderful support. Terry Tamargo and Beatriz Kohler, two caring and compassionate nurses with a wealth of extremely helpful information, ran the meeting. And what comfort to meet others who had been or were going through similar situations! Terry and Beatriz suggested I meet with Dr. Huang or Dr. Tamargo at Hopkins to discuss my options and concerns and perhaps gain a clearer path.
Shortly after that I met with Dr. Rafael Tamargo. He reviewed my most recent scan, comparing it to the original angiogram and reported signs of deterioration that the other doctors had missed. He recommended that I treat it and that clipping was the best option. As scary as it was to hear the aneurysm was deteriorating and as scary as contemplating the upcoming surgery was, there was a sense relief to finally know what was the best thing to do. Also extremely reassuring was that he felt memory loss and personality change weren’t risks I’d be facing.
The support group meetings continued to be a great source of comfort leading up to the surgery. Being around and speaking with people who had brain surgery gave me hope. And of course I had a million questions. The two months waiting for my surgery date were not easy. I tried to keep busy with arrangements for our daughter’s care in the weeks following the surgery, preparing food in advance, getting a pixie haircut so the half shaved head wouldn’t feel so drastic… anything to feel proactive and distract from worry. Saying goodbye to my daughter and parents the night before as I left for Baltimore with my husband was agony. The morning of the surgery, however found me almost giddy with excitement. The years of agonizing were over!
Dr. Tamargo and his team did an incredible job. They found it right away and took care of it with two clips. I remember very little from the days following the surgery. Within a couple of days I was coming back to my old self. I still slept a great deal but was able to eat, slowly stretching the sore jaw muscles that had been cut, and to move around. On the sixth day I returned home with 46 staples in my head. What relief – the aneurysm was gone! I cannot say enough about the team at Hopkins. The doctors, nurses and staff were skilled, attentive, caring and kind. They saved my life.
Dr. Tamargo said the deterioration was further along than he had thought even, the wall of the aneurysm was so thin he could see the blood swirling beneath it. Thanks to Dr. Tamargo’s skill I have no permanent side effects. My vision is fine. I was extremely sensitive to sound initially and fatigued very easily for a while. When fatigued it could be difficult to process information and I also found a lot of stimuli at once would overwhelm and exhaust me. Driving to new places or navigating traffic was challenging.
Looking back on it five months later, it feels surreal. The temporary side effects are largely gone – I still occasionally get more tired than normal and if I’m very fatigued I feel like my brain slows down. But that will continue to diminish. I’m alive with the future looking bright. I am incredibly lucky and will be forever grateful for Dr. Tamargo, the BAF support group, my abdominal migraines and the chance meeting with a stranger at the gym.