Brain Surgery Take Two

You know that feeling when you know something’s going to happen and you feel helpless to stop it? When you see the car trying to break but it’s inevitably going to crash, the plate falling off the counter but you’re just a little bit too far to catch it, or when someone trips over their feet a split second before you were about to warn them of the uneven ground. It always happens in slow motion and there’s always that sinking feeling in your stomach, like a lead weight. Leading up to my most recent neurosurgeons appointment that lead weight followed me around constantly.

The main issue with chiari is that because part of the brain is coming out of your skull it prevents the cerebrospinal spinal fluid (CSF) from flowing correctly between your brain and spinal cord, and this can cause headaches, especially when sneezing, coughing, or laughing as these all raise CSF pressure and because of the blockage it can’t equalise properly, difficulty swallowing is an issue, pain in the neck arises, and cysts in the spinal cord from uneven flow (syringomyellia) are caused. These cysts can put pressure on nerves and cause permanent nerve damage and pain. The goal of surgery is to allow for better flow of that spinal fluid. They do this by widening the posterior fossa (opening in the base of the skull), remove some of the C1 vertebrae, and the dura mater (membrane surrounding brain and spinal cord) that is covering the portion of the brain that is sticking out of the skull is opened up and an artificial patch is put on to allow for a bigger area. Or a brain hammock as my surgeon called it.

My neurosurgeons appointment back in early November was with one of the best professors and surgeons in the Southern Hemisphere who studies chiari malformations and syringomyellia. He sent me to get some more scans so we could get a clear image of what my brain and skull were looking like since my surgery and so we would know what to do next. We had to wait four months between appointments, that’s how busy he is. But we got answers. That’s how good he is. There was no doubt in his mind that my current headaches were being caused by my chiari. Before my surgery I was suffering from an array of symptoms, then I improved for a short while, but then I declined, and my headaches are all typical of chari headaches.

Looking at my scans he could tell that my previous surgeon had done the operation with hesitancy. Rather than removing too much bone and potentially having the disastrous issue of having my brain sagging done even further, he aired on the side of caution and removed a small portion and some of my C1. This professor did say that it was good work, but just not what he does, as he seems to have found a “magic measurement” that works for him. Another type of test also showed that my brain was moving with each heartbeat in the correct way that it should, so the surgery had been successful in that aspect. A big fear was that the dura patch that they had put in could’ve been scared and healed to my cerebellum, a portion of my brain, rather than healed to the membrane, but thankfully it healed correctly.

After going over all the scans and my symptoms and how I tracked after the last surgery, the expert told us his thoughts, and I’m to have a second surgery for my chiari on March 1^st. That’s when the lead weight feeling got extremely heavy and didn’t ease until we left the office. I can’t tell you if I expected it or not. I had doctors and neurosurgeons telling me that all my MRI’s looked fine, and realistically they did, they just weren’t up to the standard of the best neurosurgeon who deals with chiari. And considering my case, I kind of want the best. Yes it’s soon, and no there’s no reason for that other than I have nothing else planned.

I go into hospital on the 28^th of February, that morning I have another specialist appointment with a gastroenterologist because along with my brain giving me grief, my stomach is giving me hell. I do all the pre-op tests that afternoon and evening, and then the next day I’ll be under the knife. This time they wont be opening the dura membrane because it healed so well, which means recovery will be easier. He is just widening the posterior fossa, and taking more of my C1 vertebrae out.

The hope is fewer headaches, to be able to laugh and not get a headache, to not be scared of sneezing, to maybe reduce the size of my cysts in my spinal cord. But as this professor said, “the chance of you being worse after this surgery is slim to none”, and while most people would like more accurate odds, I’ve got to take them.