May 24, 2013 my son Ethan was diagnosed with an Arachnoid Cyst of the Left Cerebellopontine Angle or CPA cyst. We were comparing a previous MRI from age 3 and were shocked to find out he needed surgery within 2 weeks. He could lose his mobility in his arm or leg if we continued to wait it out since it grew by 30% since age 3. It was affecting his hearing in his left ear. He had a craniotomy on Thursday, June 13, 2013 at Children's National Medical Center. Ethan was 8 at the time of surgery. His post-op surgery MRI showed his cyst was gone and we were thrilled! Three months later his next MRI showed that the cyst has grown back to almost the previous size that it was. Currently, he is now being monitored with MRI's to watch the growth.
It's through wanting to find research, symptoms, and a connection with other families that we have started this Non Profit. We believe that kids should not suffer and deserve research and funding for this diagnosis. Join with us in this fight. Cysts Matter Too!