Sharing my NF2 Story (Nicole)

I was diagnosed with NF2 in 2009 at the age of 16, unfortunately my right sided vestibular schwannoma was very large and required 12. 5 hours of brain surgery within 2 months of diagnosis. I lost all my hearing in my right ear and left with facial palsy.

Over the years I’ve had several other surgeries. One to remove a tumour on my upper spine. My right arm was left slightly weak for several months. Several eye surgeries due to facial palsy and surgery on my nose due to nosebleeds.

This year I went through a gruelling 6 months of Avastin to try and help with my lower spinal tumours as I was in a great deal of pain.

I had a lot of side effects from avastin treatment.

Suddenly over the course of 3 weeks i started getting more tingling down my legs, increased pain, numbness on my left leg and slight loss of control over my bladder. One of the tumours was hitting on the spinal cord.

I was admitted to hospital and within days had emergency surgery to remove 4 tumours from my thoracic spine.

Thankfully, everything has returned to normal over a 3 month period, but it was a very difficult recovery.

I had 4 meningiomas on my brain and left sided vestibular schwannoma and several spinal tumours that get monitored every year with an MRI scan.

Although my left vestibular schwannoma is 7mm (4mm when diagnosed) my hearing continues to drop. I currently use a hearing aid but now meet the criteria for a cochlear implant.

Having NF2 is very difficult to live with, constant pain, hearing loss amongst other symptoms.

However, it has made me a stronger person, and I now work as a nurse to help others.

I also volunteer with NF2 BioSolutions as much as I can.

– Nicole


This blog has been created following an NF2 BioSolutions UK coffee morning chat as a way to share real stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!

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