My cavernous malformation (CM) story began in October 2022. I was 2 months shy of turning 31 and 31 weeks pregnant with my first child. One night, when I crawled into bed, I told my husband that I felt dizzy but didn’t think much about it and went to sleep. The next morning, I was still dizzy, to the point I couldn’t walk straight and felt unsteady.

 

Shortly thereafter, my family doctor diagnosed me with sinus-induced vertigo. Later that day I began to feel incredibly nauseous, and by the early evening, I couldn’t keep anything down. Alarmed for the first time that day, I told my husband we needed to go to the hospital. The doctors on call accepted the vertigo diagnosis and I was given medication to stop vomiting.

 

The vomiting didn’t return, but I continued to feel dizzy, nauseous, and unsteady on my feet. While these symptoms stabilized at some point in the coming days, I began to experience double vision. It was like my vision was “stacked” on top of each other. I also felt clumsy on my right side, like my gait and coordination were off.

 

At my follow up with my physician, she made some referrals for me. I was first seen at an emergency eye clinic.  I was told that I had nystagmus and was referred for an MRI. While reviewing the results with my husband and I, my physician indicated that I had a brain bleed and needed to go to the emergency room as soon as possible. I can’t remember if this was when we heard “cavernous malformation” for the first time. We drove to the ER, and I was admitted into the ICU.

 

Near the end of my short ICU stay, a neurosurgeon saw me. He explained that I had a sporadic cavernous malformation in the right middle cerebellar peduncle that had hemorrhaged, causing my symptoms. Being 33 weeks pregnant, he recommended a wait and see approach. In time, he would advise that the risks associated with surgery did not outweigh the benefits.

 

The lack of information about CM was incredibly difficult for me. I received no take home literature or online references to learn more about my newly diagnosed disease. It was essentially communicated to me that it was a lottery to have a CM, a lottery that it hemorrhaged, and it would be a lottery if it hemorrhaged again. I was told there was no treatment for my cavernous malformation. I found the uncertainty of my situation insufferable.

 

The obstetrics team advised that I plan a C-section and a date was set. On the night of November 8th, about one month since the onset of my first symptoms and about two weeks before I was set to deliver my son, I prayed a desperate prayer for a miracle. I was still constantly dizzy and nauseous. I couldn’t walk or see straight. There could be no way I could handle the postpartum period feeling the way I did! I was not miraculously cured of my symptoms overnight, but I received another miracle – my son. I went into natural labour in the early morning hours of November 9th, and my baby was delivered healthy via c-section at exactly 37 weeks.

 

For the next 8 months, I felt trapped in an uncooperative body. Though I was told that my hemorrhage and symptoms could have been much worse, my reality was that I was experiencing greatly diminished capabilities while trying to raise a newborn. Slowly, over time, my symptoms gradually improved. The first positive sign was that I was able to stop taking Gravol daily. Then my balance and coordination improved, and I grew confident picking up my newborn unassisted. At one point, I noticed that the double vision had receded enough that I was able to read to my son from a board book. As my capabilities returned, my confidence grew. By the summer of 2023 I was driving again, after being afraid for so long, that I would never be able to.

 

In December of 2023, I returned to work full time. In the early days, I had difficulty focusing on the computer for long periods of time and writing didn’t come as easily as it used to. This was concerning, but it’s difficult to say how much of this was caused by continued postpartum sleep deprivation/hormonal changes vs. the lingering effects of my hemorrhage. The specialists said it was the former. Regardless, within a few months I adjusted back to the rhythms of work.

 

Getting used to the uncertainty of my CM has been the defining characteristic of my recovery, as I navigate new baselines and fluctuating symptoms. Today, I am doing very well, with ongoing symptoms having little impact on my daily life. I continue to experience double vision at extreme planes of vision which is corrected with prisms in my glasses. When I am tired, sick, or stressed, my nausea and dizziness return, and I find it more difficult to focus my eyes – though never to the levels I first experienced. These symptoms can be disconcerting, but the farther I get from the hemorrhage the more comfortable I’ve become with my new normal.

 

On a practical note, I have learned it is important for CM patients and their families to advocate for themselves in the medical system. I am very fortunate in this regard as my husband was and continues to be my greatest champion and support. I’ve learned to share all your symptoms, family history, and past/future appointments across specialists. Don’t be afraid to ask questions and take initiative.

 

On a more existential note, the continued passage of time brings its own certainty. Today, though not yet a footnote, my CM features much smaller in my story as a wife and mother than it did in my immediate postpartum period. As a person of faith, I recognize that we cannot escape suffering in our lives. At the same time, I’m able to anticipate the glory to come. I am still making sense of my story, but I also have profound hope that goodness is already coming from it. I know goodness is coming for all cavernous malformation patients and their families too.