Lauren’s Grade V AVM, is considered to be untreatable due to size, depth, and location near eloquent parts of the brain.
Her AVM is encompasses most of her left frontal lobe, and spreads into her left temporal and parietal lobes. It is 8.2cm x 5.5cm x 8.4cm, similar in size to a baseball. Picture a baseball in your brain. Now picture it in a child’s brain. It’s causing damage to healthy brain tissue. It’s causing learning difficulties. It’s causing aphasia.
As of now she has no cure, although she underwent one round of gamma knife radiosurgery in May 2019. We may not know for several years if this works.
Her risk of subarachnoid hemorrhage (stroke) during her life is 99%. There is a 10-15% risk of death related to each bleed, and a 20-30% chance of permanent brain damage.
Lauren is 14. The average age at which an AVM ruptures is 17.
I live with a lot of fear, uncertainty and even grief for the life I imagined for my child. Lauren tends to keep up a strong appearance. She’s frustrated with her AVM….she’s a child who has a clear understanding of her mortality and there is just nothing right about that.