Neuro-fibro-matosis Type 2: Usually a hereditary condition but it could also be a “spontaneous mutation” of the gene cell as in my case which means I’m the first in my family to get it. The tumors grow on nerves and are present mostly in the brain and along the spine. It has no cure so unless they are causing problems or grow bigger, they are left alone, untouched.
My acoustic neuromas had caused me to lose both my hearing. It started with a ringing sound in my left ear. Gradually the left hearing diminished and by the time I was 15, I had one brain surgery done to remove the tumor on my left auditory nerve and by 16, I had to rely solely on my right hearing. Up until I was 22, my right hearing got affected. Today, I am 80% deaf and my residual hearing is very minimal. I am literally a hearing-impaired but because I wasn’t born deaf and am not fluent in sign language, people doubt my deafness when I speak. It’s really difficult to integrate and interact.
In 2015, I gave birth to my first child and I understand that pregnancy can contribute to tumor growth because of hormones. Last year, I went for my 2nd brain surgery as one of the tumors had grown in size and was pressing on my nerve, causing me to have constant headache. After my 2nd brain surgery, my balance got really bad and I no longer can walk properly or straight. It eased my headache but I have to deal with new challenges; besides my balance, my left eye becomes drier (dry eye) and I developed facial paralysis. Half my face is not working (affected facial nerve) and I had people mistakenly thought I have cerebral palsy which I don’t. My speech can also be a bit slurred due to this.
Just in the first week of September this year, almost a year after the 2nd brain surgery, I had seizures (side effect of the surgery). I cannot remember what happened. They detected a brain infection/swelling after an MRI scan. I become more susceptible to infections and have to take greater care of my immune system. Due to my poor balance and weakness affecting the strength in my legs and left side of the body, I was advised against pregnancy in the near future. I also cannot carry my child too much because of this and have been caring for him in other ways that I can. I managed to get a job with SG Enable but resigned before I went for my surgery last year. I am now a stay-at-home-mom. I cannot make phonecalls and hearing aid do not help me now therefore I rely mostly on texts, sms-es, emails or any form of writing.
My latest spinal MRI had reveal some spinal tumours , 2 of which are cramping up the nerves. I don’t know what to expect but will be monitoring them closely. Impending surgery(ies) might be needed depending on the situation.
I lose some and gain some but the gains have pushed me to make the best out of everything and be the best I can be. And I am blessed to have a small but tight circle of support. 🙂