I was diagnosed from birth- my grandad and dad have nf2, so I was very quickly tested.
Nothing of note happened until I was about 15- until I had an MRI, and they told me they thought it’d be best to treat with Avastin. I had two bilateral vestibular schwannomas on my hearing nerves, which were fast growing. So I did treatment for about six months, then stopped, then started, then stopped (I was a teenager, and it wasn’t a real danger in my mind at that time)
And time flew, and I was twenty. I hadn’t gone to the hospital for a while because I just wanted to ignore it. It impacted my mental health significantly. Then, in January 2022, I began getting thunderclap headaches; it was excruciating. So I ended up in A&E, not really knowing what was wrong; they then told me the tumours had grown to a size of being life-threatening, and my brain stem was being crushed by the tumours. So, I needed emergency surgery on the left tumour to reduce the pressure.
I had the surgery and recovered very quickly; although I was now deaf in one ear, I felt amazing!! I then told the doctors I wanted to start a family (this has been the only thing I ever wanted), so I did!! I got pregnant in March 2023 at 22 and had a healthy baby boy (with no nf2!).
I was then scanned earlier this year (I had not been scanned the whole of my pregnancy), and they told me the remaining right side tumour was huge and causing me ataxia. My handwriting is like a toddler’s, I can’t walk properly, my speech makes me sound drunk, and I have double vision in my right peripheral. I need surgery again.
My worst fear has come true; I never thought I would ACTUALLY be deaf. It just wasn’t a possibility in my mind.
Now I am facing becoming deaf and major surgery whilst my son is the tender age of 4 months. Nf2 has robbed me of so much, and every time I hear him giggle, my heart breaks a little bit more, knowing I won’t hear it again. This disease is cruel, and I wouldn’t wish it on my worst enemy. A cure needs to be found as soon as possible. Though it won’t help me and isn’t fair, it’s come to this.