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Georgia’s Schwannoma Story

01 October 2020

My name is Georgia. I was first diagnosed with Schwannoma in November 2014 after many tests! It took a year for me to notice something was seriously wrong. It all began with the occasional pain in my neck if I lay or rested my head in a certain way for long periods of time. After a while it began to affect my sleep and the pain steadily got worse and worse. Then I started experiencing a tingling sensation and numbness in my neck and face. Until one day I noticed a hard lump just under the skin on the right side of my neck.

I went to doctors a few times and left with no real answers. Over the space of 2-3 years no one new why I was getting these symptoms or had any concerns that it was something serious. Finally, one day I decided enough was enough and that I needed some answers. I decided to book another appointment with my doctors, by this time the lump was visible on my neck and was causing me a lot of discomfort.

Again, my doctor didn’t seem to think that it was anything nasty, but I insisted on a hospital referral to get some answers. After my first hospital appointment I finally had some answers and things began to move quickly towards me getting my first operation.

In total I had at least 6 or 7 MRI scans, multiple consultations, biopsy’s and cat scans. Within two months I had been to see a number of neuro consultants, ENT doctors and had a camera sent down my neck to see what was wrong. After a few appointments I realised very quickly that they were taking this very seriously and that they were in a hurry, which was really scary.

"When they finally gave me my diagnosis and told me what is was, I couldn’t take it in and I think from there on I became pretty numb to it all, it didn’t affect me at all."

After leaving the appointment and receiving my diagnosis, my mum turned to me and asked whether I had cancer or not? Thankfully, I did not. But this was still very serious as my tumour was damaging my spine and was wrapped around my nervous system. To make things worse it was also wrapped around one of my main arteries that fed blood and oxygen into my brain. We were not out of the woods yet.

I went to hospital for my first operation the following March. Again, I was numb. I had blocked it all out and never allowed myself to see or feel that this was serious for my health. I was told that without this operation (which presented its own risks) I had a 100% chance of ending up in a wheelchair or far worse!

I went ahead with the operation and the recover afterwards was very slow. This was mainly due to the fact that some of my muscles were damaged during the operation. I was left in a lot of pain and discomfort down my neck leading to my shoulder.

When it came to my job I suffered for a few years with my shoulder and neck pain. Having to lay down to rest my neck after doing certain tasks for more than 20 minutes.

Unfortunately, the first operation did not remove all of the tumour. They only removed the part that was inside my spinal cord. I would need a second operation with an ENT surgeon, along with my Neurosurgeon, to help remove the rest that was wrapped around my artery. My recovery after my second operations was a lot faster. Ever since then my neck and shoulder pain has affected me a lot less. It does pop up every once in a while, but it is not a daily problem like it was before.

I am now down to have yearly check-ups and am slowly getting back to my full strength. Unfortunately, this condition has prevented me from continuing my hobby, which was rugby. I was told I should not play it again.

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