I had my first surgery when I was 10 years old. I didn't know much of what NF was, all I knew was that I was sick. I remember my mum crying one night. She just got off the phone with my uncle. When I asked her what was wrong, she told me I needed surgery. I ran upstairs and started crying. What I know now is that she was also crying because of the amount of money that was needed to pay for my surgery. No doctor in Malaysia dared to operate on me as they are not experienced enough during that time. There was a tumor growing on my auditory nerve called an Acoustic Neuroma.
Anyway I was lucky enough to have kind people in the family to help pay for my surgery. It was performed in HEI in LA. I remember being very scared as I didn't know what was wrong with me. I very vaguely remembered my mum kissing my forehead before I was wheeled into the operating theatre.
When I woke up, I felt so horrible. I felt like vommiting. There was this huge bandage wrapped around my head. The side effects of surgery had left me deaf in my left ear and I had facial paralysis as well.
A month later, I returned to school. If you can imagine, having facial abnormalty... well lets just say all my friends turned on me except for one. I was constantly teased. Kids can be quite cruel and in this case, throughout that whole year, I practically had no friends. It gets quite lonely...as you can imagine.... But I will always be grateful to that one friend (I wont mention her name).
The following year, I started having backaches along with headaches. I would suddenly just lose my balance and fall. I wounded myself many times because of this problem. After a tennis lesson one day, I just lost my balance. For a moment I couldn't even move my left leg. I couldn't even feel it. After about five minutes, I managed to pick myself up. I twisted my ankle when I fell. As time went on, falling down suddenly was becoming more and more prevalent. This continued for a year until my mum FINALLY decides to have an MRI done. (mind you, I still did not know much about NF). When the MRI results came out, it revealed a tumor that was 6 cm in length growing on my spine. Pretty amazing huh? Throughout the course of one year, No one had bloody listened to me when I said I have excruciating backaches and I was constantly falling down. ... it gets more amazing...
This time my surgery took 12 hours. When I woke up, I immediately felt the after effects. If I attempted to just move my back, I'd feel like as if a bomb had just detonated! The pain was just EXCRUCIATING. And I had a long way to recovery. (By the way, I was just going to turn 12 yrs old).
I had to go through rehabilitation for months to get me walking again. I remember how long it took me just to take one step. The most simple tasks seemed impossible. God I hated it. And I hated my mum for pushing me to get up and walk..LOL
After skipping six months of school, I returned and I had a few more months to prepare for my finals in primary school. One thing different was a change in the attitudes of all the kids. They were very caring this time. And I ended up having tons of friends along with the best school year.. I guess we must grow up at some point .... Throughout that year .... I was complaining about harsh backaches ... BUT...no one would listen to me... most just said that I was stiff and needed to exercise... I hate that bloody word,,,,
The following year, I entered secondary school.... My class was four floors up and I needed to carry my heavy bag on my aching back....one week after school had started.. I was walking downstairs with my friends and my back felt sooooooo painful that I just completely blacked out... I fell down the stairs and I lost consciousness for like 1 minute,,, My friends brought me to the principals office and i was sent home immediately. A few weeks later, I had an MRI done. Apparently, my surgeon screwed up. When he operated on me a year back, he had to remove part of my neck bone in order to get the tumor out. He placed the bone back, hoping that it would heal by itself without the use of screws. (since you know, I was quite young.) But that wasn't the case, my bone was bending and bending and bending for one whole year and it was putting pressure on my spinal cord. This condition I have is called kyphosis. If only people would listen to me when I freaking tell them something is wrong.... you can imagine this is when anger starts to build up... This was so unnecessary...
AnywAY, in order to correct the bending of this bone, they would need to cut me up..... but there was a huge risk of paralysis. My MRI was sent all over the world... and all said the same thing...oh btw there are several tumors surrounding this whole area...
For one whole year I did not attend school... I honestly don't know how I got through that year,,, I was angry, I was depressed, I was bitter, I was suffering, and I had no one to turn to... but I am thankful for having my fellow Nfers all round the world! The decision was made not to go through surgery and until today my bone is still putting pressure on my spinal cord. The only consolation I got that year ,,,, is that I was able to meet my favorite boyband of that time, Westlife!!
The following year my mum enrolled me in Cornerstone. A Christian based school ...... It was definitely a change from the usual,...... I had a lot of catching up to do because obviously I missed one year of school and because the school had a higher standard of learning compared to government education. I told myself I was going to work my ass off... And I did so by completing 2 grades that year... while... AHEM.. finishing top,,, (Sorry la for boasting but you know, I was never considered smart in primary (only average:P).... So I enjoy saying this) I enjoyed that year very much.... The people there were very kind and welcoming and I will always have gratitude toward the pastors of Cornerstone.
When I was 15, I started getting headaches followed by blurriness in vision.... It became so bad that I thought I was going blind.... I complained about all of this and yet nothing was done until my grandma decided to call my aunt, who then called me... then she called my mum and said to make the MRI app earlier.
When the MRI results were out, It revealed that the tumor that was removed a few years back in LA had grown back, but this time, larger ////5 CM... DAMN IT I THOUGHT TO MYSELF... not again... and the tumor was nearing my brainstem... if it touched my brainstem, well ,,, u know,... I wouldnt be sitting here typing this,,,,,, once again.,,,, NO ONE LISTENS,..... you can imagine why I can become an angry person
My faith was diminishing,,,, I was so angry at God.. I thought, What the fuck did I do so wrong to deserve this.... God knows how many times I cursed him.... As luck would have it, he heard my call.... A miracle came by when I was told that I did not need invasive surgery.... I would go under a radiation treatment called stereotactic radiosurgery,,,, There were risks.... but I was desperate to do anything but surgery,..... The procedure was performed in India and boy, was it a gruelling procedure!!!
They gave me a total of 8 jabs in my head.... and it wasn't pretty... it was sooooooooooo painful..... and after that .... they LITERALLY screwed a frame on my head.... omg... shit... thinking about it makes me sick..... certainly my mum couldn't take it as she left me while this was happening. I had a few side effects...my face was bloated,,,,, my eyes looked like as if I was punched many times.... I was so relieved to have that frame removed....
Thankfully the SRS treatment worked... the tumor shrunk...
Just recently I had another MRI done.... I still don't know the results ,,,,,, whether there has been any progress in tumor growth,,,,, Of what I read in the report, I have several meningiomas, bilateral acoustic neuromas and of course, kyphosis....
OK, SO MY FINGERS HURT FROM TYPING THIS POST... lol... stay tuned for the next post when I tell you what it feels like to go through this..
Now you can begin to see what NF can do to a person.... and compared to other individuals...I'm considered to have a mild case,.....
