For the first few years after my diagnosis with NF1 I had 6 monthly brain MRI’s and consultant appointments, along with yearly spinal x-rays and ophthalmology appointments. When everything had been confirmed as stable for a while, my team decided to let me go through puberty and see me again in the future.
Fast forward to summer 2016 and I had another brain MRI. A week later we got the call that everyone dreads- they needed me to come in as soon as possible as they’d found something on the scan. I had to delay seeing my paediatrician as I was on holiday in a foreign country at the time. As you can imagine my brain was running wild with speculation- what did they find? How bad was it? Will this change anything? Will I need treatment? Will this affect my quality of life? Thankfully I had my parents by my side reassuring me and after a discussion we all agreed to face whatever comes our way with a positive outlook and our heads held high.
As soon as we got home, we phoned my paediatrician and made an appointment for the same day. This is where we were told I had another brain tumour in the 4th ventricle. The positioning of the tumour put me at a high risk of Hydrocephalus, a build-up of fluid on the brain. Thankfully the tumour wasn’t big enough to cause a problem, but the risk of it growing was too high so I was referred to a neurosurgeon at one of the top hospitals in my area. Because I was new to his service, I had to have another MRI and an initial consultation to establish what symptoms I had experienced, what the management plan was and what treatments were available to me should I need them.
During this consultation we discussed how often I had headaches, how severe they were and what I was using to treat them. We also had a small discussion surrounding my back pain and high blood pressure. I was told to monitor this and share any concerns I had. We then agreed to have yearly MRIs and reviews to monitor the tumours in my brain so action could be taken quickly should they grow further.
For the next 3 years I had yearly reviews and scans, until the pandemic hit. I managed to have my MRI before everything got too bad in the UK, but I had to have my consultant appointment over the phone. Because of the ongoing situation that appointment was almost 3 months after my scan. Deep down I knew that because I hadn’t heard anything it was good news but worry creeped into my mind that it could have got worse. Thankfully everything was stable, and my yearly monitoring carried on as normal.
Despite the pandemic I can’t fault my team at all. They were on top of contacting me whenever changes had to be made, always updated me with results whenever they could and offered support every step of the way.