In 2016 I had a brain scan for numbness, tingling and headaches to the right side of my head at the front, the results came back clear so I continued my life with these headaches that got worse over the years, thinking it was the norm.
Then in November 2023 the pain was unbearable and I noticed that I was losing my peripheral sight in my right eye so went to the opticians. The pressure in my eye was extremely high so they sent me to hospital where I later had antibiotics, loads of scans and then they requested an MRI. In February 2024, I met with my neurosurgeons and they told me I had a large meningioma brain tumour, they also asked me what my 2016 scan said as she told me that it started to grow back then, but they had missed it so I had spent years having the pains in my head, thinking it was normal. I needed major brain surgery to debulk the tumour, it had pushed my eye forward which explained the extreme pressure pain I was experiencing.
I ended up going private as I was losing my sight and was worried I would go blind.
I had a craniotomy and then they debulked the tumour and then I had a cranioplasty which is where they put a large plate at the front of my skull where they had removed part of the tumour.
I think I was in surgery around 12 hrs then I had complications after at the end of the surgery I had a periarrest I then went on to develop large pulmonary embolisms in my lungs, I needed to have a heparin infusion which gave me a brain hemorrhage and then i needed another surgery to fit an IV filter to stop them going to my heart. It was all very scary and I thought I was going to die. I even wanted to die at one point. I was in ICU for a couple of weeks before going into a ward and then got discharged after almost 3 weeks.
I now have glucoma in my right eye as a result of it and I am awaiting lazer surgery to reduce the pressure and hopefully prevent me losing my sight in the future.
I have on going health appointments and regular injections into my face and head for the pain. My chewing muscle has shrunk and it’s lower down. I’m also waiting for a fat graft as the right side of my face is different now which makes me feel noticeably different.
I also have yearly scans to check that the remaining tumour hasn’t grown. If so I would then maybe need radiotherapy which may be another hurdle I will have to overcome. I suffer with bad PTSD. I’ve had counselling but hasn’t helped. I live in fear now and my life has changed so much because of it
