When you look up the word Cavernoma, it gives you several different explanations on what it is but mostly with similar meanings. So what is it exactly? Here's what will come up first when you look it up online.
"A cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. They're sometimes known as cavernous angiomas, cavernous hemangiomas, or cerebral cavernous malformation (CCM). A typical cavernoma looks like a raspberry”
My experience with cavernoma started in 2014. Prior to this, the word has never been brought up during my check ups, not even back in DC. In 2011, while still in DC, it happened. I fainted. Out of the blue. I just fainted. We went to Sibley Memorial Hospital and I was admitted for a day. I had to do a CT scan and the doctors said everything seemed normal & told me I was probably just tired.
In 2013 when we got back home to Brunei, it became more and more frequent. The doctors in Brunei diagnosed me with arrythmia & tachycardia and told us we need not worry. I was born with an extra circuit in the heart apparently and this is what's causing it. I would faint a few times in a month and at one point, I fainted just while getting out of the car. So after a few more hospital trips and a few nights at the CCU, the doctors decided to perform ablation on me. I got better, Alhamdulillah.
Mid 2014, in KL, I began to have the fainting spells again. At one time, I fainted while I was in the shower. Luckily, my husband was just outside and heard the thud. He rushed me to the nearest hospital. Again, another CT scan. The neurologist that attended to me at that time told us that there was something there on the right side of my brain but it was nothing alarming. It was just a small clot but harmless. We went back home and again left it at that. Months after, it became more and more frequent and this time accompanied by seizures so we went to see a different neurologist in a different hospital. This time I had to go do an MRI. I hate MRIs. I am terrified of the noise and the space. I hate it. We finally heard the word cavernoma. My neurologist showed us the MRI scan and pointed out that I had several clots on the right side of my brain. He did an EEG on me and it also triggered some mini seizures. He also told us that I had to keep coming back for reviews regularly. But the worse happened. I received a message from someone back home telling me something I dreaded and all the sudden, I blacked out again...this time while I was walking along side the bed and my head had hit one of the edges of the bed. My poor husband again rushed me to the hospital and after yet another CT scan, this time the neurologist referred me to the neurosurgeon. We had to sit down with the surgeon who later told us that I should consider doing the gamma knife surgery. What it does is that it will "cushion" the clots so that it will no longer bleed. In shaa Allah.
27th August 2014 was the date of the gamma knife procedure. I was admitted the day before so they could run some blood tests and everything. I was good to go. On the day itself, the neurosurgeon and anesthesiologist came in to brief me on the procedures.
First procedure, I was to go for a skull measurement where they would mark the areas I should be "pinned" with the head frame. Next, they put on the head frame. It took 1 doctor and 3 or 4 nurses to put it on. They injected some local anesthesia on the spots where the pins (or rather screws!) were to be inserted. Although it was numb but omg! When the screws were inserted (two on the front of my forehead and two at the back), I felt so much pressure in the head. It was definitely uncomfortable. While this was done, I could feel warm liquid trickling down my face and later found out it was blood. When I saw Rafie at the door, I couldn't help but feel so sorry for him. I had a feeling it was difficult for him to see all this and knew what was probably going on in his mind. The neurologist reassured him that this is all normal.. they just got the pins wrong and they kept having to pin and unpin hence all the blood. =/ I was so thankful that the anesthesiologist just sat infront of me, kept telling me it was all going to be alright and that I was doing good. After that I was wheeled back to my room and was told to rest before the procedure. It was very uncomfortable to lie down because of the head frame. Few hours later, I was wheeled to the MRI room. For this I was given anesthesia as it was supposed to take a while and I am claustrophobic! When I woke up, it felt like I just finished counting down from 10-1. Turned out, it was almost 2 hours later! The MRI was required so they could analyse and pin point the exact areas where the gamma knife was to be done on. Moments later, they took me to the room where the procedure was to be done. No anesthesia needed as they required me to be fully awake. I was surprised when the neurosurgeon came back and told me all was done and that I could go back to my room after they remove the head gear. In the room, I was so happy as I could finally get to eat!! The day after, I was discharged after the neurosurgeon came and told us that the procedure was successful but we will have to wait for 3-6 months to actually see results. The next few months were a bit difficult as other matters arised…which I will write about soon, in shaa Allah.
One of Rafie's aunt was there too to accompany us, Alhamdulillah. None of my family members could be there as my parents were in Jeddah at that time and my brothers were all schooling, so I was a bit sad. :( I am always thankful that KL is only a 2 hour flight from Brunei so we occasionally get visits from relatives who will come to check up on me.
Okay, a little bit tired from all the typing! Hahaha. Thanks for reading!
