My name is Fabian, I am 33 years old and live in Augsburg, Germany. This is my Nf2 story:
My parents used to visit the ophthalmologist regularly with me in infancy and childhood. It was examined what is going on with my left eye, it did not respond to standard test as usual. After much research it was clear I am blind on my left eye. My dear ophthalmologist, who treats me to this day, initially tried in vain with a vision school and other tricks. The scar on the retina made it impossible to see. It followed a carefree growing up to the age of 11, for which I am grateful. I remember when I said to my mom at the age of eleven, “Mom, on the left side, I do not understand grandfather on the phone.” A bad feeling spread through my body. What’s going on here? The hearing test in the ENT confirmed a hearing loss on the left side. This was followed by an MRI, which led to the final diagnosis. Nf2!
We opted for early left acoustic neuroma (AKN) surgery to have a greater chance of getting residual hearing. The plan worked and the rest of hearing was stable despite renewed growth of AKN until today. For my 18th birthday there was another shock diagnosis. A 13.5 cm tumor was underneath my left kidney. The doctors told me that this was malignant. The kidney was jammed and relieved by a ureteral track. After the ureteral splint operation, I was allowed to celebrate my 18th birthday to have a serious and successful operation a week later. Fortunately, the tumor was not malignant and could be completely removed. Over the years, I got a cataract on the blind eye. Many smaller tumors on the optic nerves on both sides, which remained constant in size, grew on the ocular nerves. At the age of 22, due to many tumors in the lumbar spine, I developed a pronounced dorsiflexion on the left side. At 24, I said to my hearing on the right, goodbye! On the left, I provided myself with a hearing aid, which at least made it possible for me to perceive sounds. As a result I no longer saw myself able to continue my office job and was unemployed. This was followed by a major depressive phase and the struggle to get through life with the new events. Over the years, I fought back and completed a vocational rehabilitation, in which I learned a new profession, Application Developer. In the following time I saw myself working carefree, before Nf2 reported back. On the venous plexus from the right upper arm grew a Schwannoma, which caused me great pain in the right arm. I could not work concentrated and decided again for an operation. Once more, I was lucky the surgery was without consequences and the tumor was completely removed . However, the next surgery was already in sight … the acoustic neuromas got to a dangerous size. I decided against surgery and tried a drug called Avastin instead. The plan worked. I have been stable throughout the body for 1.5 years, thanks to Avastin. It saved me my minimal residual hearing on the left side and made something possible that I am incredibly pleased. I will get a cochlear implant in a few weeks and hopefully I will understand it better. Unfortunately, Avastin made me very sensitive to light, which causes me additional problems in everyday life.
But I’ll survive that, too.