Emma Young, from Kent, England was diagnosed with a meningioma in June 2012 and had two brain surgeries and radiotherapy to remove as much of the tumour as possible, however, it was not entirely removed. In the process, she was left with third nerve palsy.
Here she shares her experience:
You Can Listen To The Audio Version Here
I started to get headaches and dizziness for 6-months and went back and forth to my GP. He tried different medication and even tried me on beta-blockers. I was not getting better and I was in so much pain, so I decided to go private.
The Private Doctor gave me an MRI. I went home and waited to hear the results. When the call came, all I heard was ‘Brain Tumour’ and I didn’t take anything else in. I was distraught.
After a few more phone calls with a radiologist, she explained I would be having brain surgery at Kings College Hospital. She said she thinks I had a meningioma and it is was pushing against my optical nerve on my left side. It would not be possible to fully remove the tumour as it was wrapped around my optic nerve.
They said they could remove as much as possible with surgery and then have radiotherapy. The downside was it would never be fully removed as the tumour is wrapped around the optic nerve twice and the tumour would continue to push on my optic nerve which meant I would lose part of my sight.
I had 6 weeks Radiotherapy at St Thomas Hospital. Having the radiotherapy has been absolutely fine for me, I am in and out within 10 minutes. It is like having an MRI. Thankfully I felt no side affect with skin irritation.
Even now I get headaches and I have morphine to help with that. The pain is one of the hardest things for me. It is almost impossible to stop the pain. Due to the surgery, I have 3rd nerve palsy. My left eyelid is closed a lot of the time.
Third Nerve Palsy
I have been seeing an ophthalmologist who is medically trained to help with eye problems. They have actually designed me a contact lens that I can wear daily, one that I can put in and out and on the back of it is black. It looks like my normal eye. It is very clear. It stops the double vision I get.
The hardest thing about all of this is my fatigue. I can’t do anything at all, I put it done to my radiotherapy. While the treatment is still working in my brain it causes me so much fatigue. It makes me feel very guilty, guilty to the core because I can’t even play with my Son in the garden and stuff like that. I feel I am not able to do what I am meant to.
I haven’t been shown any support via the hospital, there are no other specialists nurses. I don’t want to bother them asking ‘Can I wear a mask patch…..’ things like that. I feel bad bothering them. I found a community online via Brainstrust, they are absolutely fantastic. They have loads of information and ways to connect with others.