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Blog

Christina’s Story

During Christmas week 2009, I felt tingling and burning in my legs, along with a “creepy crawly” feeling on my waist. I ignored it for a week, until things got progressively worse. By New Year’s Day, I wasn’t able to walk, had a drop foot, and was losing bowel and bladder function. I was brought…

posted on October 31, 2021
Cavernous Malformations ● Stories of Bravery
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Kate’s Story

It was April Fools day 2012 and I was sitting in Panera Bread working on some graduate school coursework in the morning. Gradually I began to realize that my hearing was changing, as was my vision, and slowly my left hand stopped working. I put my computer away to try the walk home to my…

posted on October 31, 2021
Cavernous Malformations ● Stories of Bravery
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Jenniffer’s Story

My name is Jenniffer and I have been recently been diagnosed with CCM disease, I have had seizures since I was 14 years old. My first brain bleed was found about 2007, then in 2011 I had my first brain surgery to remove a cavernous angioma. Fast track to now, I was finally diagnosed with…

posted on May 25, 2021
Cavernous Malformation ● Stories of Bravery
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Lola’s Story

My story, is actually my Granddaughters story! At the very young age of 3 months, I realized she was having seizures. My daughter, who has epilepsy, is the reason I recognized the seizures. I called my daughter and brought the baby to the ER. There we demanded that they do a CT on my Grandaughter. The…

posted on May 25, 2021
Cavernous Malformation ● Stories of Bravery
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Amy’s Story

Growing up I remember instances of severe head pain as far back as elementary school that self resolved. Years later I became a Nurse and worked in the Emergency Department. I helped care for patients with migraines but somehow remained stubborn in getting my own headaches evaluated. At times I would come home from work…

posted on December 26, 2020
Cavernous Malformations ● Stories of Bravery
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Jensen’s Story

When I was 13, I started having severe migraines and blurry vision. After an MRI they stated I had a venous angioma, that probably wasn’t what was causing the issues. My doctor basically said there was nothing she could do. Three years later, while in class, I had blurry vision again. I did not think…

posted on September 20, 2020
Stories of Bravery
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Patti’s Story

I too am a cavernous malformation survivor. I was 43 years old, on New Years Eve 2007. I started the day feeling sick and dizzy. By that afternoon I could not stand, talk, walk or visually focus on anything. I had severe headaches for several years but I attributed them to my hectic work schedule…

posted on September 13, 2020
Cavernous Malformation ● Stories of Bravery
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Katelyn’s Story

I can definitely say my life has not been the same since the evening of March 1st, 2020 when I was sitting in my college dining hall with my two best friends and I began to see flashes in my eyes and my legs went completely numb. My gut instinct knew something was wrong so…

posted on August 23, 2020
Cavernous Malformation ● Stories of Bravery
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Sharon’s Story

Sharon’s inspirational story of life beyond cavernous malformations: On Friday, Dec 5th, 2014 at the age of 42, I came home from work and as I sat on the couch I noticed a funny feeling in my back. By Sunday night I was in pain like I had never felt. I could not sleep and…

posted on January 26, 2020
Cavernous Malformation ● Stories of Bravery
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Deb’s Story

Deb’s inspiring story of turning her struggles into an award-winning book: In Fall 2006, when I was 46, I was diagnosed with multiple cavernous angiomas—I’d experienced fleeting symptoms (dizziness, vertigo, loss of balance, numbness and tingling in my left arm) which only lasted a couple of days. Apparently, two of the angiomas had bled. A…

posted on January 26, 2020
Cavernous Malformation ● Stories of Bravery
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