I had my first tumour in spine about 17 years ago and last Jan I had a tumor in my cerebellum. I don’t want to make this post long but my mom and her mom and sister also were clinically diagnosed with VHL: my mother brain tumour and tumour in eyes. Although none of these ladies are with us anymore VHL was just a word to us a disease that at the time only females got as that was who on her side got tumours so my sister and I we’re checked annually when I got my first tumour I to was clinically diagnosed with VHL and nothing more.
I had and still have no idea of the complexity of this disease and I’m learning something new everyday in fact it wasn’t until 2013 when I took my son for an eye exam that he too was diagnosed with VHL that they had genetic testing so we FINALLY got tested and mine of course came back positive. My 19 year old and my two year old boy have VHL my other five children do not I lost a child also and not sure if he carried the gene… when we found out my son had tumours in left eye I found out I found out two days later.
I had a tumour in cerebellum so it has been roller coaster ever since with lack of knowledge on my end and drs end … I do have about four more tumours three in cerebellum region and one frontal lobe that I was not told about only discovered this when I read a MRI report Dr gave me small but stable so I guess that’s good…
…it been emotionally hard my son now blind in left eye is left with choice of having his eye removed after a year and half of us asking Dr to do something and they kept coming back with “too risky” but now as his pain increases they’re willing to remove his eye so now goes another battle I think it sums it up.