I am a VHL Patient and have had several brain and eye, and Kidney surgeries for removal of tumors/cysts. I have had both kidneys removed and now on dialysis. I met with my transplant evaluation team during the week and they had copy of cat scans of head, neck and abdomon. On which a tumor of the thorax 1.5 cms had shown up. NOw I had met with my VHL Co-ordinator of my yearly screens at my hospital and had not been informed of this growth at all I was totally surprised. Is there any one out there who has this type of VHL growth and if so what is the outcome.
Thank YOu