When we last heard from Vera back in June she was waiting for a date for surgery to remove her cavernoma (read her story here). Fast forward a few months and Vera is now recovering from this major surgery. She has kindly shared an update, detailing her experience of neurosurgery.
There were exactly 370 days between the day my neurologist first told me I would be evaluated for brain surgery and the day my operation finally took place.
The call
I was sitting with a friend at the university, after having started studying again while waiting for the operation, when then the phone started ringing.
I answered and the woman on the phone said she was calling from the neurosurgery department. I immediately understood that my operation would now become a reality. She told me that on Wednesday the following week I would have my surgery, in exactly 7 days. I called my friends and family which was very difficult – everyone was very worried about what was going to happen. I tried to be positive and concentrate on the fact that I had been waiting for this for a whole year.
I went home to stay with my parents until the operation. I think that the long wait I had had before the operation was a blessing, as I felt ready for what was going to happen. The nervousness was there but did not take over. I trusted my doctors and told myself they were professionals. They knew what was best for me and I just had to trust that they were right.
Before the surgery
The day before the operation they took a lot of tests, went through a lot of paperwork and I was able to talk to my doctors. Everyone was incredibly talented and I felt very confident that I had made the right choice to go ahead with surgery. I went home and slept, and the next day it was time… I arrived at the hospital at 7 in the morning, had to change into surgical clothes and then a nurse came to wheel me off to the operating room. I was given some sedative medication beforehand which I think helped, without it, I think it would have been very difficult for me to say goodbye to my worried parents.
Once inside the operating room, I got to meet a surgical nurse and my anaesthesiologist. The nurse was very nice and after a minute or so of talking they said it was now time for me to go to sleep. Then it was black…
After the surgery: eating, sleeping & walking
My first memories after the operation are hazy. I was in the neuro ICU for two days which is and I remember how much pain I was in – the headache was strong and I was very tired. It found the light and sound of all the people moving around the ward very difficult. My left eye was very swollen and all I wanted to do was sleep, but it was so bright and noisy it was very hard. I was wired to a lot of machines and I also felt very sick and threw up a few times. Throwing up after a brain operation hurts a lot and it’s something I hope to never experience again. I got a high fever, which was expected after a major brain operation, as the body is wondering what is going on.
I slept a lot but woke up often, I heard the nurses talking to my parents on the phone which annoyed me every now and then because I just wanted to be quiet and sleep. It’s something me and my family laugh about a lot now that I understand they were worried and wanted to know how I was doing. Being angry at those who care about me feels unnecessary.
After two days, the fever and nausea subsided and I was moved up to a regular day care unit for neurosurgery procedures. At this point, I felt much better; my brain was clearer but I still slept a lot and was still in pain.
The days went by and I got fitter and fitter. I was able to receive visitors, which was wonderful for my family. I started to be able to walk around the ward and started to eat a little. A big problem with the food was that I couldn’t open my mouth very much as they had cut open my jaw muscle to get into the temporal lobe. Even now, 4 weeks later, I still can’t really open my mouth fully.
My recovery so far
After a week in the hospital, I was allowed to go home. My surgeons visited me several times in the hospital and said the operation had gone well.
The doctors had told me before the operation some of the things I might find difficult after the operation. In order not to get stressed, I had told myself that I would have difficulty putting sentences together and expected to have trouble remembering things for a while. Thankfully, I have actually had no problem with that at all.
I am so incredibly grateful that I had the chance to have surgery and that I was almost immediately functioning exactly as usual. I have now been home for three weeks and everything is going in the right direction.
In the beginning I slept almost 20 hours a day, but today I have been awake all day and I now sleep much like I did before the operation. I get brain fatigue easily and am a bit sensitive to being around lots of people at a time, loud noises and bright lights. But it is also something that gets better every day. I will be on sick leave until Christmas so I have quite a few weeks to fully recover.
I’ve had pain in my jaw and in the left side of my head but it’s starting to go away now. It’s hard to believe that just a few weeks ago I had surgeons remove my entire left hippocampus and that now I feel so good. I haven’t had any epileptic seizures or sensations either, which is a good sign.
I am so thankful and so proud of what I’ve dared to go through. I am also so grateful for my family and all the wonderful friends I have. Now I can finally look forward and hopefully my epilepsy will be gone forever.