Being born in 1959 with a cavernous angioma of the right temporal lobe, unbeknownst to my pediatrician, wasn’t a problem. Finding out at age 49 was. I have to say that awaking in my front yard on a gurney with strange faces all around me was startling enough, a bit of an alien experience for me. But it was just the beginning.
I remember a bright light which could have been simply the front porch light, or a small flashlight emitting from someone trying to watch me closely. Either way it was frightening to say the least, but it was momentary.
The next thing I knew I was waking up confused, sweating, shaking and with the worst feeling of doom ever. My husband stood over me with a local doctor in the emergency room. As I began to hear words I could hear my husband mumble to the doctor, “You better give her a sedative before you tell her.” And of course I responded in an utterly hysterical manner. Obviously the sedative wasn’t fast enough. “Mrs. Ayers.” I heard the doctor say to me as I struggled to free myself of the bed I was lying in. “You have had a seizure.” With that bit of information, I blacked out.
The next morning I awoke in a hospital room, my husband seated by my side in what looked like the worlds most uncomfortable chair. He looked haggard and worried, but when he saw I was awake, he sprung up. “How are you feeling?” He was curious but almost seemed afraid to ask. “Well, I’m okay I guess. What happened?” I felt better technically, but my heart was trying to jump out of my chest in a slight state of “PANIC!” I sat up in the bed and tried to get comfortable knowing that there had to be tubes running in and out of me somewhere.
My husband stroked my arm and said “You had a grand mal seizure last night and I had to call an ambulance.” I felt so confused and obviously it showed on my face. “You remember when you came downstairs last night and said you didn’t feel good?” Then it came to me. “Ah right. I felt like I was about to die or something. Everything felt scary and dark.” I replied to him. He sat back down. “Well, they did some tests and said you have a lesion in your brain, but don’t freak out! They don’t think it’s anything life threatening.”
“I see.” I thought to myself. “Why on Earth would I freak out over a lesion in my brain?” But I kept the yelling to myself. I composed myself and took a deep breath. “So, what are they going to do about it?” I braced myself for the worst. Brain surgery, or possibly nothing because they can’t fix it.
The thought of blacking out and having seizures for the rest of my life scared the crap out of me quite frankly, but I knew there could be a lot worse scenarios.
“They have to do more tests and whatnot before they decide exactly what it is, where it came from and how to deal with it.” He sat in the chair looking deep into my eyes trying to keep me calm. “It might be nothing at all. They think you were born with it and all the times you had “blood sugar attacks”, they were actually seizures from this thing in your head.”
I thought back to when I was 15 and my parents took me to our family doctor for a “shaking” problem I was having. After a 5 hour glucose tolerance test, he came to the conclusion that I was “Hypoglycemic” and immediately gave my mother a stack of dietary pamphlets that took her an entire day to go through.
“So, these shaking fits, blackouts and cramps throughout my body that I have been having all these years had nothing to do with my blood sugar?” I was livid.
My husband smiled. “Nope, all this time you were having varying degrees of seizures brought on by the cavernous angioma in your temporal lobe.” Now I know my husband was thinking, “And all these years we’ve been stuffing you full of high protein foods to keep you healthy and it never worked. Duh.” Needless to say I felt like a six foot tall woman with a pea sized brain, part of which was fried from years of seizures. “W.T.F.?” is what I was thinking, but it came out more like “Unbelievable.”
My stay in the hospital lasted 4 days and I was sent home with the diagnosis of “Cavernous Angioma of the Right Temporal Lobe”, and consequently was started on anti-seizure medication. The first of which was Dilantin.
Whether or not the Dilantin would have actually stopped an oncoming seizure or not I would never find out, due to the damage it automatically did to my liver within a week or so. Blood tests revealed that it wasn’t the medicine for me. So I was switched to one that is given to children with seizure disorders and people who can’t handle “liver intrusive” meds. The one for me was Keppra to the beat of 2,000mgs a day and a whopping $800.00 a month.
Don’t get me wrong, I don’t want to have seizures, oh hell no. But that $800.00 a month was killing us. Yes, I had no insurance to speak of, although my husband is a veteran of the US Navy. The Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA) had lost my paperwork for assistance 7 times. So, we got to foot the bill for the Keppra and not just that, but the pain medications for the wonderful “ice pick” headaches I get. Thankfully CHAMPVA finally kicked in and started paying the bills and for the meds...well, most of it anyway.
Do I sound a bit bitter? Yep. And for good reason. The blatantly obvious one being that I have lived my entire life with a seizure disorder and nobody knew about it. I have had 4 children, and a variety of other assorted illnesses yet this went unnoticed for 49 years! How does this happen? How is it that I went to so many hospitals in ambulances due to, what my husband and I thought, were “sugar attacks” but yet not ONE doctor thought to check my brain?
And here’s the corker folks, it’s hereditary! So now I get to wonder if any of my 4 children have this problem because NO doctor will just do an MRI because someone might have this CA problem. Even my grandchildren could have one.
But at least I have a little hind-sight now. Now I see why I acted in the manner that I did in my life. I know now why my parents received so many notes from my teachers saying “Becky daydreams a lot in school”. I was punished with 5 hour lectures by my strict mother for this offence.
Did the teacher happen to notice that I was, oh I don’t know, maybe drooling when I was supposedly daydreaming? And just the fact that no matter how much I studied the work that was given to me throughout school, by the next morning I couldn’t remember anything. It was as if someone had taken an eraser and wiped the board in my brain clean.
It was so embarrassing. But back then, as I am sure it is now, bullies will be bullies and the name “dumb blonde” reared it’s ugly head so many times throughout my school years. So many that I constantly change my hair color now as an adult.
So, I am 51 years old. I have recently been diagnosed with a Cavernous Angioma of the Temporal lobe and according to a neurosurgeon I spoke with, removing it “could possibly render the left side of my body paralyzed”. The damage that has been done to the rest of my brain through years of seizures cannot be undone. Wonderful. Now what? Nothing, that’s what.
I educate my family about Cavernous Angiomas and what to watch for in themselves and in their children. I do what I can to keep my life full of as much happiness as possible to relieve stress, because stress is a good way to bring on a seizure.
I have learned a lot since my diagnosis, but the best thing I have learned is that I now have answers to “why” so many things have happened in my life. I can forgive myself for the many outbursts I have had which are part of this problem.
I can stop thinking I am stupid because I never got the chance to learn as much as I could due to severe memory issues. And most of all I can live with this thing.
There’s a saying that “God only gives you what He thinks you can handle”, and I truly believe that now.
While this whole thing was completely frightening in the beginning, I have come to terms with it and can move on with my life. I am not bitter anymore. I am not afraid. I am now educated on the subject which gives me power over it.
As for why I wrote this, I guess the ramblings of one woman’s feelings about a Cavernous Angioma she was diagnosed with might just reach out and find another person who has gone through the same thing. Maybe it might help eradicate that person of fears or boost their hope. I just felt compelled to say it like it is and hope it touches someone out there.