This Woman Had a Cavernous Angioma—a Life-Altering Condition Causing Migraines and Brain Bleeding

I began getting frequent migraine headaches in childhood, starting when I was 10 years old. They happened once or twice a month, and they were intense and agonizing, with an extreme throbbing. To treat them, I kept liquid Motrin at the nurse's office in my Long Island, New York, school. The sticky orange liquid managed the pain enough so I could go back to class and concentrate.

My mom mentioned the headaches to my pediatrician, but no one worried too much about them at the time. Both family members and doctors chalked them up to hormones, eyesight issues, or just being a growing girl with a changing body.

Little did they know that the headaches were a sign that I actually had a cavernous angioma, also known as a cerebral cavernous malformation (CCM), a collection of abnormally formed blood vessels in the brain that could leak blood. That diagnosis wouldn't come until over a decade later, after my headaches got worse and other unsettling symptoms started to develop.

Numbness and slurred speech begin

The headaches continued through my teenage and young adult years. They started to get worse in college, when I often found myself skipping classes or parties because of the throbbing pain.

But it wasn't until October 2020, when I was 24, that things got much worse. I was at work teaching preschoolers when my right arm suddenly went numb. That was followed by more odd symptoms. I started dropping things—paper, books, scissors, everything kept falling from my grasp. Several days later with my arm still numb, I began slurring my speech. I kept my symptoms to myself, hoping they'd go away on their own.

Things didn't improve—they actually got worse. So I visited my chiropractor, who I had been seeing for back pain, for answers. I hoped my symptoms were caused by something physical, something he could fix through his usual spinal and joint manipulation.But his adjustment provided only temporary relief. That's when he suggested I see a neurologist, and that maybe something was wrong in my brain.

With apprehension, I met with one two weeks later. He advised me to get an MRI "to be on the safe side," based on my symptoms. The MRI itself was a distressing experience; lying in such a tight space I felt cramped, and the machine was so loud. My doctor called me just hours later. It was late on a Friday, which made me suspect something was wrong even before I picked up the phone.

Diagnosed with CCM

That's when the doctor dropped the bomb: I had an inoperable formation deep in my brain called a CCM, a cluster of abnormal blood vessels. CCMs affect 16 to 50 per 10,000 people worldwide, and 25% of those people never experience any related health problems. And because people with the condition don't experience any signs or symptoms, they might not even know they have one—unless they were to get brain imaging for other neurological conditions.

But I had symptoms. My CCM—which my doctor said was something that I had likely been born with—was the cause of my lifelong headaches. When the cluster hemorrhaged in October of 2020 while I was at work teaching, my mobility and speech took the hit, and that's why I had the numbness and slurring.

CCMs can run in families, and when they do, the affected person will usually have multiple CCMs; these are caused by gene mutations. But CCMs more commonly develop in people without a family history of them. In these cases, there's usually just one CCM (like I had), and there's no known cause.

CCMs can change in size and number over time, but they do not become cancerous. I was beyond thankful to hear that the CCM was benign, yet I was still rattled; there was something in my brain that wasn't supposed to be there. Naturally, I was scared, so scared that I still struggle to remember the specifics of the phone call that night.

At that moment, it was as if everything had stopped. But there was no denying the truth: I had a CCM deep in my left corpus callosum (the part of the brain that connects the brain's two hemispheres), and the doctor said its location and depth rendered it inoperable.

'I woke up with the worst migraine of my life'

My doctor told me to just go about my business as usual. To me, that was a seemingly impossible task. But he assured me that the hemorrhage could have been a one-off occurrence and that I'd likely be fine as long as we just monitored the CCM periodically. He even said that my symptoms could improve.

But things didn't get better. One night six months later, I woke up with the worst migraine of my life. I didn't know it then, but the CCM was hemorrhaging again. Although the pain made me feeI as though I could be dying right then and there, my neurologist told me to "try Tylenol." The next morning, the pain was gone, but a strange pressure remained in my head. So I asked my doctor for another MRI, and two weeks later it showed that my CCM had doubled in size. Despite the growth, my neurologist insisted it was inoperable due to its location deep in my brain.

I had already done some research on CCMs after I was first diagnosed. Now that it had bled a second time, I was researching constantly. So was my family. At first I didn't want them knowing how panicked I was and wanted to prevent them from worrying about me, so I'd research at night in my bed on my own. But once we all found out that we were doing our own research separately, we started working together and made joint decisions about my next steps. Managing this condition became an open, loving conversation.

I also joined a private support group on Facebook, called Angioma Alliance, where others who have my same condition can ask and answer questions. Once I started reading other people's experiences, I realized that my CCM could potentially be removed—and probably should be removed. After all, I had also found information that explained that hemorrhages are more likely to recur in people whose CCM had already hemorrhaged, and hemorrhages could lead to progressive neurological damage and even death.

Reading that my CCM could kill me or cause something like a stroke was enough to spur me to get a second opinion. But this time, I wanted to see not just a neurologist like my current doctor but a neurosurgeon who could better gauge whether my CCM was operable.

After hopping on the internet, I came upon the name of a top neurosurgeon and managed to schedule a consultation. It was during this initial meeting with the neurosurgeon that, finally, I felt an intense calm. When he walked in the room and put his hand out to shake mine, I really did feel like this would be my surgeon, that I was finally in the right place. He made me feel confident that I was in the best hands. He told me he would operate on my CCM; that it wasn't inoperable after all. For the first time in months, I felt like maybe I would be OK.

This intense calmness was something that stayed with me, even as I scheduled my brain surgery for July 7, 2021. It stayed even when I was told about possible side effects of the surgery, like loss of speech and coordination on the right side of my body, due to the CCM's location and depth. It remained as I said goodbye to my mother and sister in the parking lot on surgery day and as I bid my father goodbye inside while heading to the operating room. (Because of COVID-19 restrictions, only my dad was allowed in the hospital.)

My CCM was now the size of a strawberry, and I had to have a left frontal craniotomy to remove it.That meant they would have to remove part of my skull to access the section of my brain where the CCM was. And when I woke up six hours later, unable to speak no matter how hard I tried, that calm somehow prevailed over my intense alarm. I remember thinking to myself, It's fine, if you never speak again, you'll just communicate via an iPad. I was just so committed to staying positive despite everything. It was hard, I'm not going to lie, but I knew I had to be patient with myself.

Life after brain surgery

After the surgery, the neurosurgeon called my father and told him that the entire CCM had been removed successfully; I have no memory of when they told me the same news. I stayed in the hospital for four nights before returning home. For about six weeks after surgery, I needed help with absolutely everything—including bathing, eating, and walking. My hair had been removed in a two-inch thick strip, and I had 40 staples in my head from ear-to-ear like a headband.

My weakened body was on full display in such an intimate way, which is challenging even in front of family. After living so independently my whole life, I was completely vulnerable. I needed my sister to bathe me, and I depended on a catheter to go to the bathroom. I struggled with simple activities that were second nature before. I wondered if this was my life now, entirely dependent on others.

But I slowly relearned how to speak again over the next few months, to spell words like "cat," to take a shower on my own, to use a fork, to walk again. At my three-month scan, no new growth was detected. I will have to get annual MRIs to monitor my brain, and it is possible that I will have the same symptoms again. But for now, my brain is at peace. While I do struggle a bit with short-term memory, brain fog, and light sensitivity here and there, I've had no headaches since the surgery.

What my CCM experience taught me

The importance of listening to my instincts and advocating for myself is probably the most important lesson I learned. I requested a second MRI, I did the research, I got the second opinion, I found a surgeon who gave me the relief I needed. I'm proud that I made the best educated decision for myself and that I spoke up.

What I went through has also given me some beautiful, newfound benefits: My bonds with my family—my parents and sister who slept by my side when I was so vulnerable—are stronger than ever. We've always been really close, and now we're even more mindful to not take each other for granted. We are grateful and cherish each moment we have together.

I also have an overwhelming sense of gratitude for being alive and healthy after coming so close to death's door. Moreover, my journey has given me the gift of a totally renewed appreciation of all that I am so lucky to possess: more time to live my beautiful life.

While I am on a leave of absence from work this school year as I recover, I do plan on returning to work as a teacher next year. I'd also like to raise awareness of CCMs and help as many people as I can who are struggling with them; I want to be a sounding board to listen and validate their concerns, be a voice of reason and strength, and answer any questions they have.

At its core, this is a story of positivity, and I want people to know they're a lot stronger than they could ever imagine. I am living proof of that.