I developed hydrocephalus as a result of my ruptured brain aneurysm. From the Mayo Clinic: Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain.
Cerebrospinal fluid normally flows through the ventricles and bathes the brain and spinal column. But the pressure of too much cerebrospinal fluid associated with hydrocephalus can damage brain tissues and cause a range of brain function problems.
About six weeks after my coiling procedure, I had a VP shunt placed in my head. The shunt is programmed by a magnet and can be easily adjusted. It allows the fluid to drain into my abdomen because my busted brain doesn’t work properly. The shunt is located in the back right side of my head. There is a large bulge there and the drain goes into my abdomen.
I’ve been lucky with my shunt. I haven’t needed any revision surgeries and the setting they picked seems to work well for me.
I have a love/hate relationship with the thing. Of course, it keeps me alive. Even though people told me it’s ok to lay on the shunt, I find that when I do, I wake up with a headache. I can’t sleep on my stomach. It’s just not comfortable for me, so I end up sleeping on my left side most of the time. This has caused me some issues now that I’ve been doing it for almost six years. I have developed pain in my left hip and knee that seems arthritic and related to all the weight being on my left side for 1/3 of my life. I sleep with a pillow between my knees, but that hasn’t helped.
The pain has gotten so bad that I have started alternating between sleeping on my left and right side every other night. I have to pick which I’d rather have: a headache, or an arthritic left side. I feel like a hip and knee replacement are assuredly in my future, however.
But more recently, I’ve become irrationally angry at my shunt. To explain, it’s important to understand that strong magnets can inactivate the shunt. I can’t go near an MRI machine. When I get an MRI, they wheel me in so my head is never at the same level as the magnet. After each MRI, I have an X-ray of the skull to verify my shunt settings. It’s a whole process. I have to get orders placed by neurology and then a neurologist needs to sign off on the X-ray and determine the settings of the shunt are where they should be.
My son….my sweet boy, has an extremely complicated medical history. Without sharing too many details, he has to have an MRI of his brain next week. He’s six. They don’t want to sedate him. He’s going to be terrified. It’s not going to go well. We are looking for a brain tumor. A fucking brain tumor in my fucking six year old son.
They said a parent can go and hold his hand during the procedure. I can’t go with him. I can’t be the one to hold his hand because of this stupid shunt. His appointment is at 6 pm, and I know what a shit show it will be if, in fact, I do go, and my shunt’s settings get fucked up. I just can’t risk it.
So, there is another thing that having a brain aneurysm took from me: being able to hold my son’s hand while he’s scared during an MRI.
If you are the praying kind, please offer up some prayers for sweet Gabriel. If you don’t pray, please put some positive energy out into the world for him.
I anticipate that we will have a go at the MRI, he’ll panic, and they won’t get good images. Then, we’ll have to reschedule it with sedation. I tried to get it scheduled with sedation but the MD wanted to try it without, first.
We probably won’t have answers for awhile.
Limbo really sucks. Waiting is hard. I’ve never been good at it, especially when so much is on the line.
The scared part of me has suspected this tumor for almost a year. The logical part of me tells me I can’t possibly know that. So we wait for the radiologist.
I will try my best to stay calm while I wait. But, it’s excruciating.