Brainwaves NI is Northern Ireland’s only volunteer led brain tumours research and support charity

Research is fundamental to finding a cure for brain tumour. We have a strong relationship with the Patrick G Johnston Centre for Cancer Research, Queen’s University, Belfast.

Over the last number of years we have provided over £500,000 funding towards that vital research.

Over the last number of years we have provided over £500,000 funding towards that vital research

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Aimee Alderdice

Committee Member

In May 2019 was diagnosed with a Grade 1 Pilocytic Astrocytoma. This was a benign brain tumour and attached to my brain tumour was a large cyst. The tumour and cyst were situated close to my brain stem and cerebellum. My lesion probably lay dormant and my brain and body got used to, until it could take no more. It was a matter of urgency that I got surgery to have the tumour removed. 24 hours and three hospitals later, I was having emergency major brain surgery. With an amazing surgeon and care team at the Queen Elizabeth Hospital in Glasgow (where I was living at the time), the tumour was successfully resected via emergency posterior fossa surgery at the back of my head. My body recovered well and amazingly five days post op I went back to my flat to recover, then two weeks later I went home to Northern Ireland for a longer road to recovery.

Unfortunately, at the end of August 2019 I found myself back in hospital. I was rushed to A&E at the Ulster Hospital with an unusual severe migraine, extreme sickness, numbness in my hands and feet, and horrific neck pain. I was blue lighted across to the Royal Victoria Hospital during the night for an emergency surgery, to insert an external drain. I was diagnosed with hydrocephalus which is pressure on my brain, this can happen after major brain surgery. It was decided a day later I would have more surgery to insert a Ventriculoperitoneal (VP) Shunt to permanently regulate the pressure on my brain by maintaining the cerebral spinal fluid (CSF) surrounding my brain. This would require more time for recovery post-surgery, but since then I have not looked back and my body and brain are heading in a positive direction. Post surgery I will continue to have MRI scans to monitor the situation.

The support, care and expertise I have received has been nothing less than the best! I am a Psychology graduate and Qualified Personal Trainer, so I appreciate that health is a subjective experience and means something different to everyone. By telling my story I want to add to the awareness of brain tumours and the fact that they can develop at any age. I want people living with or affected by brain tumours and their families to know that they are not alone on this journey, which is why BrainwavesNI is important to me and my family, and has a special place in my heart.

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