Living with Neurofibromatosis

It all started when I was about 37 when I started going to my doctor with a sensation of something deep inside my ear canal. Eventually I was referred to an auditory clinic where I had all sorts of balance tests (I wasn’t feeling dizzy or losing my balance at this stage). Nothing was found. (no scans at this point). Continued on and off with this sensation and then during my 47th year stared getting tinnitus (sounds like it was it was raining, ). I also kept knocking my left side like when I went through doorways.

I then started noticing that when I was out walking I would start going to the left. I also felt when driving that might hit parked cars on my left. Then the left side of my tongue went numb and the only relief was sucking ice -lollies. Started to get bad headaches. Had to start sleeping on the other side to what I was used to. Felt a sense of doom and depression . Doctors really slow to refer. Took me writing out my own history and bursting into tears with a consultant before they sped up my MRI scan. By this time I was getting bouts of pressure headache that I just had to deep- breathe through. Got diagnosis pretty fast after the MRI (which gave me a 48 hour headache and visual disturbance) I had an acoustic neuroma which had grown along the acoustic nerve and was pushing on my brain stem (the size of a small tangerine) I was to be referred to St George’s Hospital Tooting .

However that weekend my left side kept collapsing like I was having some kind of stroke . So I got my husband to drive me first thing over to the Hospital (with my scan results) and I was admitted that day and operated on 3 days later. Apart from completely losing my hearing and some problems with my salivery glands.. I function pretty normally. I find the partial deafness frustrating and hate busy restaurants or parties. But I am extremely lucky having stayed in a neurological ward for 11 days you see some unhappy scenarios unfold. I was lucky to have a top surgeon in Professor Bell on my case.He kept my facial nerve intact and that certainly aided the recovery.