The Turning Point (A Cavernous Angioma Survivor Story)

You'd never know when your life is going to change

or what changes it.

For me, it was right around the end of last year, December 30th, when I was working while waiting for the year to pass. Around the evening, suddenly I felt my right hand go numb. Dizziness sprung. I couldn't type words I wanted to type simply because my eyes couldn't find the right keys. I stood up, trying to reach a cupboard nearby, but I lost my grip of a pen and papers that I hold that time. When I saw my arm fall down flabbily like that, that's it. I knew something was definitely wrong with my body.

My first thought was stroke. Before that, there happen to be a few times when I feel as if I had nerves disorder. I couldn't speak, couldn't type words correctly (like I didn't remember where the keyboards are, something which is absolutely impossible for a normal, phisically-healthy people who have typed for more than 10 years). Later that night, my father took me to a general practician, who would later tell me to go have a blood check. She also suspected a stroke, but stroke doesn't usually happen to young people.

The next day after, I did a blood check and also saw a neurologist in Eka Hospital. From the blood check, we found almost nothing unusual. Only why level of a subtance (forgot the name) was a little bit high, but the doctor said it was probably because I was nearly on period. Then the neurologist asked me to do an MRI, although he thought nothing was wrong. "Just to make sure," he said.

I did an MRI that afternoon. Was scared as hell. Who would've thought that MRI would be that scary, with those noisy sounds and loneliness inside the tube.

Then the radiology person stopped and asked me to call my Mom. I immediately knew something was wrong and started to break down. They found a mass inside my head.

So I undergo another MRI, this time with contrast injected.

The result would come out in 2 days, because it was actually December 31st. The new year's eve. I was crying and crying, felt like I was gonna die soon. I didn't know what was in my head and the suspense was killing me. I didn't feel like eating or do anything. I remembered my parents, how this must've made them sad, how my live would go on after this.. and so on, and so on..

On January 2nd, the result came out. We immediately seek a neurosurgeon in Siloam Hospital. The neurosurgeon read my MRI photos and after that did a physical examination. After that, he concluded that around 80-90%, I must be having Cavernoma. Good news was, Cavernoma is not dangerous. Bad news was, I must get a surgery, because if not I might be paralyzed and it would just get worse and worse. After we heard his opinion, my Dad immediately book a ticket to go to Melacca. We intended to ask a second opinion to a doctor there. We went to Mahkota Medical Center, then we met Dr. Parthiban Navoo, specialist neurosurgeon who would later performed my surgery (yes I decided to do it). He said I shouldn't risk going back to Jakarta and wait, because the cabin air pressure in the plane could be dangerous and because the bleeding had just stopped so it was the best time for them to do the surgery. 

That evening, I actually got another seizure. My hand got numb and I couldn't find an enter key on the cellphone. My dad and I finally made a decision to do the surgery and on January 5th, I was hospitalized, forbidden to eat anything after 12 midnight...

I just couldn't sleep. I was nervous, but not really scared because I would be under the anesthesia for the whole process.

On January 6th, around 9a.m., they took me to the surgery room. The nurse pushed me on the wheelchair (I was naked, only wore the hospital green robe!), then in the surgery room, they moved me to the table and I was placed in some kind of a waiting room for surgey patients. I remember having a conversation with one of the surgery staff, a small guy with glasses who has a cheerful smile, asking me some basic information like my name, where I was from, etc. He also explained to me what was gonna happen in the operation, and what I could expect after the operation. I would wake up in ICU, they would put cathether on me, etc etc. I was also really nervous so I started talking crap to him, asking how long have he worked here etc. Then the staff pushed my table, the cheerful guy put a mask on my face and asked me to breath deep. I did, and after the second inhale, I didn't remember anything anymore.

When I woke up, I was already in ICU. I remember my first question I asked to my Dad when I woke up was, "Operasinya udah selesai, ya?" (The surgery has finished, yea?).

Then, 12 hours after that was nightmare.

I was in the ICU alone. After certain hour, my dad had to leave. I felt so thirsty  as if I hadn't had water for months, but the nurse wouldn't let me drink too much for the first few hours after I woke up. Then I was afraid to move too much, although my back and my neck hurt so bad from my sitting position. Cathether didn't help, either. During the night I remember I woke up crying because I was so tired from my sitting position. It was around 1 or 2 a.m., when my nurse came to check my condition. She said I could move a little bit, just be careful because I still have somekind of a blood palette hanging from my head ( I know. Sounds scary, right?). 

Times moved really slow. I tried to sleep but the ICU was really cold. The needles and the other stuff that they put on me also prevented me from moving too much. I stressed out.

Once I can see the sunlight sneak in, I got excited. I wish Dr. Parthiban would come see me soon and allow me to move to the normal room. I waited for hours, my back was still hurt, but he didn't show up I started to cry again.

Finally, around 10 or 11 a.m., he came to see my condition. First I did CT scan again. The result came out good, so Dr. Parthiban ordered me to be moved to the normal room. Around 1.30pm, I was discharged from the ICU and moved to the the 8th floor of the hospital. 

At first, it was so difficult even to walk. I felt like flying and couldn't keep my balance, but with TV and my dad next to me, I feel much better already.

The next day after, I got a surprise. My friends, Ncim and Iche, came to visit me. I was so touched I cried. Didn't realize hoe stress I was to be so far away from friends and family. I also got a nice motivational video from my Wall Street English friends and students. And then, my mom also came with my uncle. I was so happy.

The lab result for my tumor also came out, which confirmed as "Cavernous Angioma".

My condition kept getting better everyday. Doctor ordered me to shower (you don't know how much I miss showering under clean running water!!), I could eat real food again, not just tasteless nasty food from the hospital (I always get nauseous after eating their food, so yuuckk..)... but things I missed most was my home. I really wanted to go home.

Finally, 6 days after that, I was discharged from the hospital. Dr. Parthiban told me to come back 3 months later for another MRI. We book the earliest flight to Jakarta, and then, I was finally home.

Thus started my journey towards recovering.

But overall, I really could't express my gratitute to my God, my Goddess that Inpray to, Kwan Im, to my family and friends who always support me.

I am just so happy to be healed. We will never know how precious it is until you suddenly suffer from a disease and think that you might die. So that's why, never take your health for granted. Stop smoking, stop eating junk food, etc. I'll post more about my disease later.

Have a great life, everyone!

Almost a Year Later

So, on my last post, I wrote about the first time I got Cavernous Angioma, or also known as Cavernoma.

I would like to write down a few update of my condition. So let's get started!

1. Around first week of March, when I thought everything was going well, suddenly I realized my head oozed some kind of fluid. It was clear, kind of thick fluid, and a bit yellowish too. I panicked. I read a lot about infection of the incision site and this definitely is one of the things that I definitely have to be worried about.

2. Then my dad came home, immediately took me to see a local neurosurgeon in Siloam Hospital. At first, he glanced at my leaking site and said it was just an outer wound and it should be fine. I got antibiotics to prevent me from further infection.

3. Things is, we forgot to ask the doctor how to take care of that leaking wound. My dad insisted to not showering until the wound healed, because water would make the healing process to be slower. I didn't even wash it with clean water because my dad also told me not to, although from what I know we must clean the wound with running water. It's something that I kind of regret later. 

4. Almost a week after that, my head still oozed the fluid. the wound was also getting bigger. I was really worried so we saw the doctor again. This time he looked really shocked, telling me if it didn't stop oozing fluid, then there must be something wrong with my surgery. The fluid leaked from my skull, so the infection was from inside. He said I had to do another surgery to remove my infected skull, then close it, then they will put a fake bone flap to it. So basically he said I had to do a bone flap surgery. I suspect that it was because I didn't wash my wound and my parents kept telling me to put some kind of chinese herbal medicine on the incision, something that later I would find out, is not supposed to do. You are not supposed to put anything on the incision site.

5. I was scared to death. From what I read, getting infection on your surgery site often are more dangerous than the tumor itself. Another surgery might bring other infection and clearly not a guarantee that you'll be healed. I could've spent the next few months in the hospital, getting IV injection. And so on. And so on. We immediately book a plane ticket to see Dr. Parthiban in Malacca.

6. Dr. Parthiban told me quite the same thing, that I had to do another surgery (and an MRI before that). But it didn't mean I have to remove my bone flap. They would open my head again yes, but only to see if the infection came from the inside or it was only from the surface. If it was from inside, they would clean my bone and put it back. But if it's from the outside, then they would just close it and gives me injection. Or something, I couldn't remember.

7. Unfortunately (or probably fortunately), he was busy with surgeries until next week after. So instead of waiting in Malacca, we decided to go back to Jakarta first. Dr. Parthiban gave me stronger antibiotics that I should take everyday. To cheer me up, my father took me to Kuala Lumpur. I didn't really cheer me up, though, but I tried to.

8. I don't know what miracles had I got, but a week after I went home, my incision stopped leaking fluid. It was probably from the antibiotics. Dr. Parthiban said I didn't need to come back to Malacca for the surgery. Let's just see for a month if it still oozed fluid or not.

9. I tried to move on with my life. I still cried occassionaly whenever I remember I might probably have to do another surgery. But I came back to work, carried on with my life, and tried to forget things. My family and friends gave me such incredible supports that I can imagine, especially my mom. Sometimes people just don't understand what the big problem is. They only know that it is an infection. It's gonna be fixed with antibiotics, so why the big deal? They don't know. But my mom always cheer me up and very understanding. I remember her hugging me and telling me it's gonna be ok. I didn't trust her that time, but it was really comforting.

10. A month later, my head still didn't ooze any fluid. Parthiban said I didn't have to come back nor do another surgery. I feel extremely grateful. Extremely, absolutely, totally grateful. But I still have to do another MRI to confirm whether the infection still lingers or has gone away completely. I did, and the result was good. No more infection. I can come back again next year for the follow up.

Overall, now, 10 months after the surgery, I feel great. I can do my activities like usual, body works perfectly well. Sometimes I get confusion a little bit, but I think that's the side effect from the surgery. It's a major one, so no wonder there's something different from your body. The leaking site is a little bit sinking, though, but overall I'm fine.

Hopefully I would never have to undergo that hell again. Not me, not family, not the people I care of, not you.

:)

If you have any questions or want to see some pictures, feel free to leave me a message.

Have a good day (and life!)!