Editor’s Note: This article was shared with us by our friends at the Cure NF2 Foundation, in honor of May 22nd being World NF2 Awareness Day. To see the article in its original format, please click here.

[IMAGE DESCRIPTION] Kim is in a garden at Addenbrookes hospital, next to the ‘Tree of Hope for NF2-SWN’. She is sitting in a hospital wheel-chair in a grey beanie hat, grey cardigan and colourful spotty blanket, holding a teddy bear and facing the camera.

I really struggled with having this surgery and had to make a very difficult decision to get there. It has only been 2 years since I completed treatment for my last meningioma and I struggled with confusion and fatigue. I also had a spell of around 6 months where I had severe dizziness, fatigue and daily headaches in 2025 and I actually stopped driving for 3 months as it started to affect me whilst I was driving. I was offered radiotherapy (RT) or surgery, the RT carries the same risks as surgery but over a different time frame. The risk of swelling & seizures remains but with surgery it is hours to days yet with RT the risk is months to a year after the treatment, it would also mean significant permanent hair loss. I had thought long and hard about what to do and decided on surgery. I have really struggled with my mental health in the past and couldn’t bear the thought of hair loss, yes I could have got a wig, but my hair is a very big part of who I am, I love having my hair done and find it very relaxing. I was supported by the NF2 team at Addenbrookes, particularly Jools (NF2 Nurse) and Karine (NF2 psychologist) throughout and had appointments with them both prior to my surgery.

I don’t regret having the surgery despite me having complications. I have no recollection of around 6 weeks of my life. Its as though it didn’t happen, I have no recollection at all. My last memory is of me saying good bye to my Dad on the day of surgery and sending a picture to my brother, Liam, who lives in Australia. After surgery, I was scanned when the Dr’s realised one of my pupils was not reacting and had to be rushed straight back for a fix of the bleed that was found on the MRI.

Next thing I know it is 6 weeks later and I have been told I spent 2 weeks in Neuro Critical Care and a few days in high dependency before being moved to ward C7 where I spent another 6 weeks. I have no recollection of this the first 6 weeks at all. I have had several issues since my surgery, one of which being a very painful shoulder, I was also quite confused. It was strange waking up with an Nasalgastric tube and I was really hungry being just tube fed for 6 weeks. I also had a picc line for daily bloods. After surgery I could not move my left side, previously I have had post op paralysis in my right side and still have right foot drop so the team were worried I may develop foot drop in my left foot. Being me, I pushed myself to recover as quickly as possible when there was talk of me needing to go to Neuro rehab for 3 to 6 months. Thankfully I recovered so well I didn’t need to go to rehab and was discharged home after 8 long weeks in Addenbrookes hospital

I have no lasting effects other than a painful shoulder which I am seeing an osteopath for whilst I wait for Community Neuro Physio to begin.

We so desperately need better treatments for NF2-related Schwannomatosis I have more tumours and have a pattern of 1 being removed then the next one starts growing rapidly. Cure NF2 are the only charity currently raising funds for this. Addenbrookes Hospital has a new ‘tree of hope for NF2-SWN’ and I visited it a few times whilst I was in hospital.

– Kim Whitlock, Cure NF2 Foundation Trustee and NF2 patient