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!)!