NF2 - ROBIN'S STORY

My story with NF2

I can’t explain how moved I was when I was told that Vince wanted 3 charities to benefit from this ride one of which was the Neuro Foundation. No one asked Vince to do this it was just what he wanted. He was a very special man who I was immensely lucky and proud to have as a friend.

Jeff asked me to write how NF2 has affected my life so I thought I would write down my story so far…………..

Vince and Robin 2003 (after England won the Rugby World Cup)

Back in the dark mists of time when I was a young boy I used to have these episodes where I would just blackout. They always seemed to happen when I was in trouble but, that’s another story.

As a teenager I noticed some bumps on my body so I had a couple of operations to remove them. The Doctors said they were nothing to worry about.

I had an epileptic fit when I was 21 and apparently managed to swallow my tongue so woke up in hospital wondering what was going on. Again the Doctors said it was nothing to worry about and explained that a lot of people have one seizure in their lifetime.

While I was in Australia in 1993 I noticed the hearing in my right ear was getting worse however being a young man I just thought I had something in it so would sort it out when I got home. I carried on bungy jumping which in hindsight was probably not the best idea.

I returned home in 1993 finding myself completely deaf in my right ear, I had another seizure or fit ending up in hospital once again. However this time the Doctors were a little more concerned so sent me for an MRI scan. I remember what seemed like endless doctors looking at the scans until they finally came up with a diagnosis of Neuro Fibromatosis Type 2 telling me I had something called bi lateral acoustic neuromas or tumours on both auditory nerves. They seemed to know very little about the condition and after looking through endless text books sent me to see a neurologist in Southampton.

This appointment was one I would never forget as after a 10 minute consultation and without her seeing my scans she decided that the tumour on the right hand auditory nerve needed to be removed as soon as possible so casually booked me in for a bit of brain surgery the following week. To say I was shocked was an understatement however she then revealed she had never done the operation before.

Fortunately we saw a telephone number for a charity which in those days was called The Neuro Fibromatosis Association (NFA), now renamed as The Neuro Foundation. After calling them I had an appointment for a second opinion to see a Dr R Ferner at Guys in London. It was her opinion that after seeing my scans that there was no need to remove the tumour on the right hand side at the time. I was a little relieved thinking I like this Doctor as she also thought the best thing was to monitor the situation.

There were further tumours found in my head, on my brain stem and on my spine so I had regular MRI scans to see if they were growing.

The NFA also put me in touch with their NF2 support worker, a lady named Jo Castle who over many years was a great help to me and I’m sure others.

Things started to change in 1996 when after a large seizure it was decided that although I still had some useful hearing in my left ear the tumour on my left hearing nerve needed to be removed. The tumour sits next to the facial nerve as well as the nerve that affects your balance so removing it not only affects your hearing but, can also damage these other nerves.

After 13 hours of brain surgery at Kings College in London I woke up to find that the left hand side of my face paralysed, I had a bit of a headache and I was in a totally silent world. You are aware before the surgery you will lose your hearing but when you wake up after the surgery to find you are no longer able to hear the people who love you and you are in complete silence is a huge shock and very isolating. The conversation goes on around you and at times I do feel extremely lonely.

In total I spent 3 months in Kings as I needed 3 further operations, I think by the time I came out I had lost nearly 4 stone in weight.

The vision in my left eye had been next to useless since I was a child. I could tell you if it was day or night but not much else. With the facial paralysis I was unable to completely shut my left eye so I needed to hold it shut to go to sleep. Thankfully I had 2 operations a few years ago to correct this problem. The corner of my eye was sewn shut enabling me shut my eye without having to use my hand.

In recent years I have had 4 further operations on my spine to remove tumours that were causing me problems with my legs or weakness in my hands. Unfortunately one of these operations caused me to have drop foot on my left side and I now have to wear a brace to hold the foot up as I no longer have control of my foot.

I’m due to have an operation this year to remove a tumour on my nose which is affecting my breathing

They have also found that I have tumours within the nerves themselves so I have limited feeling in my hands and feet.

There is a problem with my swallowing because of the paralysis which makes eating a little difficult at times.

Lately my balance seems to get worse by the month which I find increasingly frustrating and I seem to get very tired even after the slightest exertion.

I confess there are times when I find myself extremely depressed about how much my life has changed since I was 21 but, I have met some wonderful people because of NF2, I have a fantastic doctor looking after me (Prof R Ferner) but, above all I have a truly great friend in Jeff. I also know if I face life with just half the courage and dignity that my great friend Vince faced his battle with then I will be ok.

All the money that is donated to the Neuro Foundation from this wonderful challenge will go towards the next NF2 weekend.

These weekends only happen once every 2/3 years and bring together people from all over the country who have NF2. It gives you the opportunity to talk with people going through similar experiences to yourself. While those attending have to pay for the weekend the foundation arranges for speakers. Some of which are truly inspirational.

Thank you for taking the time to read this and I hope you can help us in some way.

Footnote written by Jeff Davis

I have known Robin for 23 years and have seen how NF2 has changed his life.  Over that time I have witnessed the pain he suffers and the deterioration in his quality of life and can honestly say that during those 23 years he has only ever complained about his predicament once.  He is the most remarkable friend and a true example to us all of how to deal with life's misfortune.

As Robin has said above The Neuro Foundation has been of enormous help to him and others suffering a similar fate so please spread the word and do all you can to help this cause.