Insights on Neurofibromatosis Type 2 (Ongoing Monitoring)


I started my NF2 journey by going to hearing tests and did MRIs after my diagnosis. It was a dreadful routine, tiresome and costly. Different cases experience symptoms differently but one thing for sure, we all need regular monitoring.

I remember having to take half-day leaves from school for appointments and tests. When I had my first surgery, I was in Secondary 3 and had missed school for a month. The routine follow-ups continue up ‘til today. My case was almost closed by the hospital management when I got pregnant and didn’t get any MRI done for a year. But it has since resumed. I am currently back for appointments and more follow-ups from different specialists after my recent seizure attack and spinal issue.

NF2 does need regular monitoring as we have no idea when the tumours decided to grow and pose a threat to our well-being. Usually they remain stable for a long period of time and would have a very slow growth rate. However there are cases where the tumours grow rapidly within a short span of time due to differing causes. One such causes, as per my case, is pregnancy. Pregnancy could possibly cause a tumour to grow in size due to the change in hormones and blood flow.

There are other reasons which I am unsure of myself but many speculated that excessive sugar intake could also contribute to the growth rate. Keeping a healthy diet and lifestyle is vital to us as with many other health conditions. But we could only do our best. I personally find it hard to curb my eating habits to a healthier one as I am a dessert person. 😊

Eating clean is what I am trying to do but it will not determine my recovery from this condition nor will it guarantee any healing or cure. I could only do my best, think positive and go for follow-ups to see my progress. Because there’s no definite cure, it is important for us to monitor our progress in order to know if we need immediate attention or to take it easy, a day at a time. ☺️