To those who don't know, I suffered a brain stem hemorrhage (cavernous angioma) on November 10, 2013. I remember the date very well, as it was my husband's (and my father's) birthday. Great birthday gift, huh?
On November 11, I woke up to a vague numbness on my left side. I did not think much of the symptoms, as I have a hereditary peripheral neuropathy--- which means I occasionally get temporary numbness in my hands or legs. This numbness, however, was significant enough that I bothered to mention it to my physician husband. When I told him of the symptoms, he immediately blanched. It was the same look he got on his face when I was delivering our first child--- kind of mix of shock and disbelief. He immediately said, "I think you've had a stroke."
I completely dismissed my husband's concerns. After all, if I had had a stroke, certainly I would not feel well, right? I felt just fine, perhaps I little more tired than usual, but fine. My symptoms were very mild and not too troubling. I was not concerned in the slightest.
After a few days, I conceded that perhaps this was not my usual peripheral neuropathy flaring up. The numbness was gradually increasing, and I was feeling slightly weak. I was not able to get an appointment with a neurologist until November 22, 2014. Who knew neurologists were so difficult to get an appointment with?
My new neurologist was very kind, but was not familiar with brain stem angiomas. He was rather baffled by my symptoms. We did not realize my history had any bearing on my current condition--- and neither did my doctor. Although I had had a documented grand mal seizure in my twenties due to bleed of parietal/occipital lobe cavernous angioma, none of us considered the possibility of a cavernous angioma being the cause of the symptoms. My neurologist suggested blood work and an EEG to rule out a tumor or any seizure activity. We all felt this was appropriate, although conservative. My neurological exam did not show significant weakness, and my coordination was still pretty good.
As time progressed, the numbness and weakness grew. The full effect of the bleed was not evident to me until over a month after the first symptoms appeared. Now, my entire left side was weak and numb; additionally, I had some right-side involvement. Almost overnight, my entire head, face, and jaw went numb. My balance was poor, and I could only get up the stairs in our new house by gripping onto the hand railing. I constantly felt like I was "falling backwards" in my head, even when I was walking forwards. I had a strange pressure in my face and around my eyes. My vision was not sharp anymore. I had some occasion trouble with swallowing. I finally acknowledged to my husband that something was majorly wrong.
A friend of the family pulled some strings to get me an MRI.
On December 2, 2013 I finally had an MRI. The scan showed a huge brain stem hemorrhage. The culprit? A cavernous angioma occupying the entire Pons of my brain. In addition to the brain stem lesion, I have approximately 12 additional lesions scattered throughout both brain hemispheres. Each of these lesions represented a past bleed. Needless to say, my husband was horrified at the sight of the MRI. He didn't know what to do... but he started making lots of phone calls.
With new evidence in hand, I was able to schedule an appointment with a Phoenix neurosurgeon who has extensive knowledge of cavernous angiomas.
On November 11, I woke up to a vague numbness on my left side. I did not think much of the symptoms, as I have a hereditary peripheral neuropathy--- which means I occasionally get temporary numbness in my hands or legs. This numbness, however, was significant enough that I bothered to mention it to my physician husband. When I told him of the symptoms, he immediately blanched. It was the same look he got on his face when I was delivering our first child--- kind of mix of shock and disbelief. He immediately said, "I think you've had a stroke."
I completely dismissed my husband's concerns. After all, if I had had a stroke, certainly I would not feel well, right? I felt just fine, perhaps I little more tired than usual, but fine. My symptoms were very mild and not too troubling. I was not concerned in the slightest.
After a few days, I conceded that perhaps this was not my usual peripheral neuropathy flaring up. The numbness was gradually increasing, and I was feeling slightly weak. I was not able to get an appointment with a neurologist until November 22, 2014. Who knew neurologists were so difficult to get an appointment with?
My new neurologist was very kind, but was not familiar with brain stem angiomas. He was rather baffled by my symptoms. We did not realize my history had any bearing on my current condition--- and neither did my doctor. Although I had had a documented grand mal seizure in my twenties due to bleed of parietal/occipital lobe cavernous angioma, none of us considered the possibility of a cavernous angioma being the cause of the symptoms. My neurologist suggested blood work and an EEG to rule out a tumor or any seizure activity. We all felt this was appropriate, although conservative. My neurological exam did not show significant weakness, and my coordination was still pretty good.
As time progressed, the numbness and weakness grew. The full effect of the bleed was not evident to me until over a month after the first symptoms appeared. Now, my entire left side was weak and numb; additionally, I had some right-side involvement. Almost overnight, my entire head, face, and jaw went numb. My balance was poor, and I could only get up the stairs in our new house by gripping onto the hand railing. I constantly felt like I was "falling backwards" in my head, even when I was walking forwards. I had a strange pressure in my face and around my eyes. My vision was not sharp anymore. I had some occasion trouble with swallowing. I finally acknowledged to my husband that something was majorly wrong.
A friend of the family pulled some strings to get me an MRI.
On December 2, 2013 I finally had an MRI. The scan showed a huge brain stem hemorrhage. The culprit? A cavernous angioma occupying the entire Pons of my brain. In addition to the brain stem lesion, I have approximately 12 additional lesions scattered throughout both brain hemispheres. Each of these lesions represented a past bleed. Needless to say, my husband was horrified at the sight of the MRI. He didn't know what to do... but he started making lots of phone calls.
With new evidence in hand, I was able to schedule an appointment with a Phoenix neurosurgeon who has extensive knowledge of cavernous angiomas.
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