Neurinoma

TRUTHFUL HISTORIES

Anna

Hi, my name's Anna. I live in the UK and came across your website whilst
browsing for info on NF2.

My father has NF2 and was first diagnosed about 25 years ago - apparently he suffered with loss of balance and 'an itching' in the ear! After various visits back and forth to the doctors he was told it was a ear infection! It took a change of Doctor, who took one look in his eyes and diagnosed a brain tumour. After further investigations, acoustic neuromas were diaganosed but unfortunately the one on the right hand size was by this time very large and he was taken in for immediate surgery.

The first tumour left my father completely deaf in his right ear, with severe facial paralysis, dry eye and very bad balance. He as about 30 and my brother was just a little baby - he has never heard my brother speak, which is something I find very distressing.

Anyway, a few years later a tumour on the left was diagnosed and further surgery undertaken. This now left my father profoundly deaf although there was no further facial paralysis. He underwent plastic surgery to correct the facial paralysis, which was 100% successful but he has a slightly wonky smile......just seems like he's always smiled like that now! He also tried a gold weight in his eye lid to help it to close, but again this was unsuccessful as I recall it was then shut constantly! He continues to use eye drops.

Bearing in mind this was approx. 30 years ago and surgery wasnt what it is today, the surgeons assured him they had got all the tumour and no further MRI scans followed. He went on for a further 25 years without any further symptons, or so we thought - which I will come back to shortly.

At the time of my fathers diagnosis, there was little known about NF2 and the researchers/specialists carried out various tests on myself and my brother and sister although at this stage, due to the cost and lack of funds, no MRI scans were carried out. We were told that there was a 50/50 chance that we would carry the faulty gene but as the years went on it was all pushed to the back of our minds really.

That was until 3 years ago, at the age of 30, when I started experiencing severe headaches that lastest for weeks. As a family with NF2 in our history we are always conscious of the symptons so to put my mind at rest I went to the Doctors (which happended to be the same Doctor that diagnosed my father all those years ago) Although, I have since been told that these type of tumours do not cause headaches. I was sent for an MRI scan and lone behold they found two microscopic acoustic neuromas - one either side.

At this point I was devastated. My whole world crumbled as all I knew about NF2 was what my father had been through, so to me it meant deafness and facial paralysis. Of course I took it out on my partner - even made him sit in a room in silence with the lights off! so he would know what it would be like to live in total silence (obviously without the tinitus thrown in).

I was referred to the UK's top NF2 specialist - which means travelling across half the country! only to be told that as the tumours are so tiny and my hearing is ok at present they will simply monitor them with annual MRI scans and hearing tests.

During this time the Doctor recalled my father for further follow up scans as none were ever carried out and again they found a further tumour on the right hand side - the size of a golf ball! so off he went for further surgery. My poor old Dad, I know he gets down sometimes but to him it was just another brain operation and he was out of hospital within a week and looks better than he has for a long time. The only plus side was that there couldnt be an side effects as he has already lost his hearing!

I had my last scan in March and am still awaiting my results from that - however, I have odd feelings in my right ear, which I am thinking is an omen. But I must remain positive, I have taken up a course in sign language - so I will be prepared for the worst should it ever happen - which I actually really enjoy!!

Although sad to read others stories, it does help and makes me realise that I am one of the lucky ones.

Keep up your good work of spreading the word.

Kind regards and best wishes, Anna x (littleone7@hotmail.co.uk)