What is Cavernous sinus meningiomas (Grade 2)?
Rare tumours that affect the cavernous sinus, an area that control eye movement and allows your face to feel sensations. Cavernous sinus meningiomas can cause double vision, dizziness and facial pain.
What is a craniotomy?
A surgical procedure that involves removing a piece of the skull to access the brain.
A routine eye examination led to a cancer diagnosis and a harrowing surgery and recovery, which is still not over for me. Along the journey, I have received some amazing support from the Ngā Kete Cancer Kaiarahi Service, Cancer Society and Hospital staff.
I didn’t think anything of going for my routine eye check earlier this year, so I was surprised when the examiner told me something was wrong with my left eye.
I was referred to the eye clinic at Southland Hospital where a multitude of tests were carried out. I was then diagnosed with meningiomas, an uncommon benign cancer that could turn cancerous if not removed.
I was told that I was born with the condition and it was only picked up when a meningioma ruptured behind my left eye. It had attached to the bone and had started pushing through my
eye. My eye had been a little puffy but I had no idea!
I couldn’t believe it. Prior to this, I had always been a healthy person. I had suffered from occasional headaches, which would involve numbness on my face, tingly teeth and vertigo, but I thought this was a normal headache just like everyone else would get.
In May, I was sent to Christchurch for an emergency six-hour surgery. Multiple meningiomas were removed which they called debulking, and a titanium mesh plate was inserted into the side of my skull. I was left with 40 staples and a large shaved patch of hair.
I thought I would have the surgery and that would be it, but this wasn’t to be and recovery was tough. I spent two weeks in rehab in Dunedin learning to walk again, dress myself, and even how to make a cup of tea. I had lost the ability to do so many things! It was like I had gone back to being a child.
It took a long time to get my strength back, and I am still working on it today. I still have almost no appetite so I frequently have to be reminded to eat, and I am often cold. I am still tingly around the eyes, tender in places, and certain lights hurt my eyes.
I’ve been told I can’t do chemotherapy because I wouldn’t survive it, but next year I will either be having another surgery to debulk on the other side of my skull, or radiation. Radiation can cause some horrendous side effects including losing the tear duct in my eye but I will do whatever I need to do.
I met the Ngā Kete Cancer Kaiarahi team about a month ago when I was referred by a kaimahi at Southland Hospital. They have helped me so much! If I ever need support to get to an appointment they take me, and I know I can ring them if I am having a bad day and they always make me feel better. I have so much trust for them.
They introduced me to the Cancer Support Group, and I have absolutely loved being part of it. The kaimahi often pick me up since I can’t drive. I had never been on a marae and it was so exciting getting to know the culture. I never thought I would be in a position to be able to do that. The group have been so helpful and I know they are all here for me.
I am so lucky with the support I have received. It really means a lot to me.
I am a much stronger person now and I am determined to beat this disease. I know it could kill me but I just don’t entertain those thoughts. With all of the support around me, I know no one will let me give up.
I’m enjoying being headache-free since the surgery and I am looking forward to the light at the end of the tunnel.
