George’s Schwannoma Story

My mum noticed a small lump on my neck, just above my collarbone, when I was ten and took me to the GP, at first they thought that it may have been lymphoma and I was referred to the hospital, and under general anaesthetic, a biopsy was done. 

At the beginning, I had no symptoms apart from the lump but after having the biopsy, I started having nerve pain in my hand, which is manageable but annoying.  Luckily, the results from the biopsy showed it was not lymphoma and the lump was diagnosed as a schwannoma and I was referred to a specialist surgeon in London and the Neurofibromatosis Specialist Clinic at Guy’s Hospital.

They couldn’t confirm if I had NF2 but I attend the clinic each year. Up until the age of eighteen, I had a MRI scan every year to check on the tumour.

I’m now twenty and the tumour is about 15cm in length and looks like I have a tennis ball on my neck. They don’t want to remove the tumour, as there is a risk of it growing back and also, the tumour is in a difficult position, and nerve damage could happen in the process, which could lead to limited use of my right arm.

So for now, the surgeon is going to leave it. If it grows anymore and starts pressing on my nerves, causing pain and affecting the use of my arm, then surgery is an option.

I am very lucky that at present, it doesn’t affect my daily life but if I do have problems in the future, it is nice to know there is support out there from Nerve Tumours UK. 

I wanted to complete the Great West half marathon to challenge myself and to raise awareness and funds for Nerve Tumours UK. The race went really well, I completed it in 2 hours and 5 minutes, and was very pleased with this time.

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