A few of you know what's been going on with Allison, but I figure I should probably let everyone know. Before you get freaked out, she's okay right now, we're just figuring out a strange medical condition.
It all started about a year ago when we noticed a bump on her head, above her left temple, that looked like a goose-egg, but she couldn't remember hitting her head, at least not hard enough to cause a bump. We watched it for a while, but it never seemed to get any smaller or go away like a goose-egg should. And it was hard like a bone, not soft like a goose-egg. She called it her duck-egg, which I thought was super cute. After a few weeks I took her in to the doctor to check it out. He said sometimes a hard bump can cause calcification which can take a few months for the body to break down and remove. So he recommended watching it a while longer and see what happens.
By December it hadn't changed at all so when I took her in for her birthday check-up they recommended getting an x-ray to see what that would tell us. So we did and the results came back, "Well, all we know is that it's definitely NOT bone," and they told us to see a neurosurgeon once we got settled up here (since we moved to Utah the next week.)
It took a while for us to get a job and then longer to get insurance, but we finally saw a pediatrician who reviewed the x-ray results and said we should get an ultrasound done. So we did that last week and the results came back, "Well, it definitely IS bone, but we aren't sure why." I was thoroughly confused at that point. They said our next step was to do a CT scan.
So yesterday we had the CT scan done and the radiologist found a large Intercranial Arachnoid Cyst which is a cyst on the arachnoid membrane that holds the cranial fluid around the brain. They can cause mass protrusions from the skull, so that would explain the bump on her head. They are congenital, so she's likely had it since she was born. One of the symptoms/signs associated with it is Cranial Asymmetry and when Allison was a baby I noticed that her head was a bit asymmetrical, but I don't see that as much now that she's older. The doctor's never mentioned it at the time, so I didn't think much of it. Another symptom is headaches which she has sometimes, but they aren't very severe. It can also cause other serious symptoms like developmental delay, seizures, hydrocephalus, partial paralysis and other things, but luckily Allison has never had any of those problems.
So our next step is to see a neurosurgeon and have an MRI to confirm the diagnosis and discuss what treatment (if any) is needed. From what I've been reading, most of the time they don't do anything if it isn't causing major problems. In fact, most people who have these are asymptomatic and it only gets detected when they are checking on something else and see it. I thought this was interesting: depending on their location on the brain, they have been associated with depression, schizophrenia, bipolar disorder and other mental illness. "Most neurosurgeons see a correlation between arachnoid cysts and mental illness and consider the two partially related." Makes me think these may be more common than we realize.
We have an appointment with a pediatric neurosurgeon at Primary Children's Hospital next Monday to figure out what to do next. She will be having an MRI at some point because they are better than CT scans at seeing the different types of tissue. If treatment is required, that could mean a shunt to drain any excess fluid caused by the cyst or surgically removing the cyst altogether, neither one of which sounds very pleasant. So if you could please say a prayer for Allison we would appreciate it. I'll let you know what happens after our appt next Monday.
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