Diagnosis: Cavernous Angioma of the Temporal Lobe

The ramblings of one woman’s diagnosis and how it made her feel.

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.”

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  1. Nice work on this.

  2. Yep, you have touched me. I am so sorry you had to suffer all your life with this without knowing what it was. I won’t even go into doctors not picking up on things I have been there and done that. I am still very bitter. Maybe one day i can reach your stage of forgiveness but not right now. Wonderful article and well written. God Bless and Take Care.

  3. wow. :-( Makes me feel pretty lucky; when I was four years old it was discovered that I had a brain tumor ‘the size of a small tangerine’ which was successfully removed. No complication since, of any kind. Back in 1965, discovering a brain tumor, -let alone successfully removing it, -was really quite a feat.

  4. I’m am so sorry you had to suffer like that. Your story was wonderful to read and I hope it helps someone else that might be going through the same thing.

  5. Just got diagnosed with cavernous malformation of the temporal lobe following a grand mal seizure. 30 years old. The treatment is anti seizure meds. No surgery. I feel like a walking time bomb. Thank you for sharing your story. Makes me feel better to know I’m not alone.

  6. Hello Swede,

    Thanks for your wonderful post. I am incredibly intrigued because I was diagnosed some years ago with a cavernous angioma after I had some bad headaches, but the doctor at the time said they weren’t related.

    For years though I have had muscle cramps and pins and needles pains all over my body along with intermittent disorientation and other issues. Like you I associated these with blood sugar issues, and like you I tried a high-protein diet that helped but certainly hasn’t ended my ills. No neurologist was willing to connect my problems to my angioma, but now I think there might be a chance!

    Could you tell me how your doctor connected your cramps and such to your angioma? Could you perhaps tell me your doctor’s name so I could find someone with similar sentiments? I live down in Virginia but I would be willing to go anywhere to get this solved. Thank you so much.

  7. Thank you for your post. I am just starting this process at 26 when I started noticing memory loss and having headaches, and I go back to the neurologist in two days. It is nice to know that I am not crazy, and I hope that my doctor will determine something soon. Thank You!

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