Diagnosed 2016

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My name is Jo Armstrong, I am 36 years old and in November 2016 I underwent an Endoscopic Third Ventriculostomy (ETV) to treat hydrocephalus that had occurred as a result of an intraventricular grade 1 neuronal-glial tumour. I shall never know conclusively but it is quite probable that the tumour and resulting hydrocephalus had been with me since birth because the symptoms I increasingly exhibited were present from early on.

My birth was a complicated breech which resulted in asphyxiation and a stay in intensive care. I was discharged from hospital with no apparent complications however from my earliest memories I recall feelings of unsteadiness. I couldn’t stand being spun round quick or turned upside down. As time progressed feelings of pulling and dizziness increased, school was a nightmare and I struggled with dizziness every morning on getting up. When I felt sick in the morning and complained of this pulling sensation it was always put down to stress then ear and neck problems. Life was about getting through the next day of events when all I wanted to do was sit still in a quiet place. Everyone thought I was the shy kid, not wanting to integrate but that couldn’t have been further from the truth.

When I look back the sole thing that kept me going over the years of not knowing what was wrong was the unrelenting support of my parents. They always believed that something more than just stress was causing my daily symptoms. The frustration we all felt that no one listened was finally alleviated when the Neurosurgeons at Queens Hospital, Romford took on the case. Two years prior to that, migraines became a daily issue and despite this my doctor thought it was my ears and requested an MRI. That was the catalyst for discovering the hydrocephalus. This led to dealings with another local hospital the experience being far from satisfactory but then by some strange turn of events Queens took on my case. We shall be eternally grateful to Mr Haliasos and his team who performed the operation. He believed that the symptoms I had been exhibiting all these years were as a result of the hydrocephalus and so recommended that an ETV was performed first. The tumour which had caused the hydrocephalus was in a part of the brain not easily assessable, so any surgeries to remove the tumour would be as a last resort.

The tumour is now monitored on a yearly basis following the initial 6 monthly check-ups. I have been given a life now free from symptoms and I pray that it continues, that the hole made in the brain remains open and that the tumour does not grow to a point that would cause symptoms.

I don’t know what the future holds but what I do know is I’ve finally been given my life to live at this point in time and I don’t ever want to be in a position of regret that I didn’t do what I wanted to when I was able to because of a fear of what may happen in the future. It would be very easy to get bitter at the years that have gone by with misdiagnoses and all the opportunities that I’ve missed out on as a result of the problem. I am not going to waste more time!

One thing I would say to anyone is listen to your instincts. If you feel something is not right than keep pushing for an answer and as in my case request an MRI scan. Also if you’re not happy with one neurosurgeon get further opinions. The contrast in the neurosurgeons between the two hospitals was incredible.