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Laura Gardner - Cavernous and Venous Angioma

"I was very disoriented...I couldn't remember anything from most of the night."

 

I'm 33 years old and have two children with severe medical issues: An 8-year-old daughter with congenital heart disease and a 4-year-old daughter born with bacterial meningitis, Noonan Syndrome phenotype (meaning no blood match for specific gene mutation) it looks like it may be new, but affects all systems of the body: heart, lungs, kidneys, etc.

When I was 30 years old, and my youngest was 6 months, I had my first bleed. It was after a concert and my family thought I was drunk because I had to be carried from the limo to bed, but I wasn’t drunk - I barely had a drink that night. I had blacked out from the bleed for 18 hours and when I came to I was very disoriented. I couldn't remember anything from most of the night, my sister and family thought it was funny and that I had been “drunk”.

I went to the hospital but found out a few weeks later (while my youngest daughter was undergoing open heart surgery) that I have a venous and a cavernous angioma, and that I needed brain surgery. I declined and refused medical treatment…For many reasons, the number one being that there was no guarantee that it would solve the problem completely, or that it might leave me disabled. I am full time caregiver to my two daughters who have severe medical problems, who have ongoing surgeries and diagnoses and the fact that my youngest child is handicapped. Doctors warned me that I was ticking time bomb and that it would happen again.

It did happen again and I live with debilitating issues everyday: numbness in extremities, dizzy spells, excruciating stabbing pains in my head that bring me to my knees at times, vision issues, memory loss, violent migraine headaches, etc. I joined this group and have watched and read many stories, and like anyone, I’m afraid but more for my children to either be motherless or to become a burden, handicapped and unable to care for them. I plan to start radiation this summer in hopes that it will help my situation, I thank all of you for sharing your stories. It has been comforting to know that none of us are alone.