#1 ·
Hello everyone. I’ve started this thread so we can exchange experiences and offer recommendations to one another. Specifically, I’m talking about cerebrovascular malformations—in my case, a cavernoma. I’ll share my story first, and hopefully, others will feel comfortable doing the same.
I am 23 years old. Back in January 2019, I had a nasty fall while skiing on my very first day in France. I tumbled down a slope for quite a while, though fortunately, I didn't suffer any immediate physical injuries. However, shortly after, I started noticing what felt like flickering lights in my peripheral vision while staying in the apartment. I asked the others if they saw anything, but nobody else noticed a thing. Once I got back home to New York City, the flickering stopped entirely, so I just chalked it up to the lighting in the rental.
Then, in the summer of 2019, the light flickering returned. I realized it was triggered by spending extended periods in dark rooms, and these symptoms have persisted ever since—yes, even a year and a half later. I saw several ophthalmologists, but my eyes were perfectly healthy, so the next logical step was a neurologist. Finally, this past May, my neurologist ordered an MRI, which revealed a frontotemporal cavernoma.
The flickering lights haven't stopped, and sometimes I experience flashes in my eyes as well. I am still undergoing a battery of tests to confirm whether the cavernoma is indeed the culprit behind these visual disturbances.
One thing I found absolutely fascinating happened during the MRI scan itself. At one point, I felt a tingling sensation on one side of my face, running from my jawline up toward my forehead. Every time that tingling occurred—let’s say it happened five times—the lights would flicker in that exact same pattern I usually experience. Then, when the tingling shifted to the other side of my face, the lights flickered again.
Another strange detail: the tumor isn't located in the occipital lobe, which is the brain's visual processing center, yet my visual disturbances remain constant.
My follow-up appointment with the neurosurgeon is scheduled for December, and that’s when we’ll decide on the next steps. Personally, I’m optimistic that things will turn out fine, especially since I am under the care of Robert.
Now, I would like to hear your stories, your thoughts, or any recommendations you might have. Anything helps. 😁
I am 23 years old. Back in January 2019, I had a nasty fall while skiing on my very first day in France. I tumbled down a slope for quite a while, though fortunately, I didn't suffer any immediate physical injuries. However, shortly after, I started noticing what felt like flickering lights in my peripheral vision while staying in the apartment. I asked the others if they saw anything, but nobody else noticed a thing. Once I got back home to New York City, the flickering stopped entirely, so I just chalked it up to the lighting in the rental.
Then, in the summer of 2019, the light flickering returned. I realized it was triggered by spending extended periods in dark rooms, and these symptoms have persisted ever since—yes, even a year and a half later. I saw several ophthalmologists, but my eyes were perfectly healthy, so the next logical step was a neurologist. Finally, this past May, my neurologist ordered an MRI, which revealed a frontotemporal cavernoma.
The flickering lights haven't stopped, and sometimes I experience flashes in my eyes as well. I am still undergoing a battery of tests to confirm whether the cavernoma is indeed the culprit behind these visual disturbances.
One thing I found absolutely fascinating happened during the MRI scan itself. At one point, I felt a tingling sensation on one side of my face, running from my jawline up toward my forehead. Every time that tingling occurred—let’s say it happened five times—the lights would flicker in that exact same pattern I usually experience. Then, when the tingling shifted to the other side of my face, the lights flickered again.
Another strange detail: the tumor isn't located in the occipital lobe, which is the brain's visual processing center, yet my visual disturbances remain constant.
My follow-up appointment with the neurosurgeon is scheduled for December, and that’s when we’ll decide on the next steps. Personally, I’m optimistic that things will turn out fine, especially since I am under the care of Robert.
Now, I would like to hear your stories, your thoughts, or any recommendations you might have. Anything helps. 😁