*Content Warning—This post contains medical stuff that might gross you out*
After three brain surgeries, I think I’m finally all sorted out.
The first one, over a year ago, was to remove an epidermoid brain tumor. I’ve talked about that plenty on my blog, so I won’t repeat it here.
The second surgery was on September 13th, 2018. I had developed hydrocephalus from the first surgery and was leaking cerebrospinal fluid (CSF), so they had to perform an open craniotomy to repair the leak from the other side. Unfortunately, because my CSF pressure was so high (about twice what it should have been), the leaking continued.
I woke up with the biggest black eye I had ever seen. It looked like a purple/black baseball stuck to my face. The whole right side of my head was HUGE. I also couldn’t chew, and could barely open my mouth, since they had had to peel off my temporalis muscle from the bone for the surgery. As painful as it was, I was happy to have my mental faculties in a good place. The only thing that was really difficult with the recovery was how easily I tired out; I couldn’t even do simple, quiet activities like reading or watching TV for very long at all without feeling worn out.
When Brendan and I went back to UW Medical Center two weeks later to get my craniotomy staples removed, the doctors saw that the leak wasn’t fixed and admitted me back into the hospital right away. That was… shocking, to say the least. Brendan and I hadn’t even brought a change of clothes, since we thought we’d be driving home that afternoon.
What happened that evening broke me in a way I had never been broken before. They did a lumbar puncture with very little pain medicine (since I wasn’t in the ICU, there were limits to what they could administer) and with me fully awake and alert. I can’t really talk about it. I’ll just say that it’s something I will never do again without heavy sedation.
Anyway, the doctors had my sign papers agreeing to a sinus patch surgery. Then, sometime in the wee hours of the morning—like, 3:00 or 4:00, I can’t remember exactly—one of the surgeons woke me up and told me there was a change of plans. They had decided that since my CSF pressure was so high, no patch would hold. Therefore, they had decided to put in a shunt.
All I knew was that I would have a permanent device on my skull, and tubing that went from my brain’s ventricles to my abdomen to drain the excess CSF fluid. I signed the consent papers for the surgery.
The next morning, they performed the surgery, placing the shunt on the left side of my head since the right side was still healing from the craniotomy. They had to attach the shunt itself to my skull in one place, then they drilled a hole behind my left ear to place the catheter tube, which goes from my brain ventricles (where the CSF wasn’t being absorbed properly) all the way down to my abdomen, where the CSF could be absorbed back into my body.
There were a few incisions down my torso that they used to guide the tubing. The big incision was in my abdomen itself. They had to feed the tube through my muscle wall and peritoneum. That incision is still healing, and periodically, it causes shooting pains through my belly. My head is pretty lumpy now, but the incisions are almost fully healed.
When I first got the shunt, I had to go back to the hospital and have it adjusted twice, since it was draining too much fluid. Low-pressure headaches occur when you don’t have enough CSF, and they feel like migraines that medicine can’t relieve. It means your brain isn’t protected like it should be, and sitting up and standing are excruciating.
Eventually, we found that having it adjusted twice was too much, and the leaking had started again. So we went back to have the shunt adjusted one last time, and now it seems like my levels are just right.
Third time’s the charm, right?? I’m so pleased that we finally figured everything out. Thanks for sticking with me, everybody!