Hi everyone. I’m 38 years old and live in Ottawa. Sister and I got the gene from our father, my 7 year old son carries as well and just underwent bilateral adrenal cortical sparing procedure to remove two extremely aggressive pheos. Won’t know for another few weeks if the cortical sparing was successful. We were all diagnosed as carriers about 5 years ago.
We’ve all had surgeries - my dad for spinal hemangioblastomas, my sister, son and I for pheos, and my sister has had a brain hemangioblastoma removed as well. We all have multiple adrenal, pancreatic, spinal and brain lesions (Except my son who so far has only had the bilateral pheos). Most of those currently fall under the ‘watch and wait’ category.