Keeping in mind that signs of a shunt malfunction can differ between individuals, here's a partial list of symptoms of a malfunction in children:
- Headache
- Vomiting
- Irritability
- Lethargy
- Confusion
- Decreased performance at school
- Personality change
- Swelling along the shunt tract
- Fever
This isn't a checklist; not every symptom needs to be present in order to suspect a shunt malfunction. As you can see, several of these signs mimic common childhood illnesses. If you have children, no doubt one of them as been sick with vomiting, lethargy, fever. My favorite is personality change. Um, have you met any ten year old girls?
Over the past few months, Anna has had two incidents of a sudden headache with nausea. Both times, the headache cleared within a few hours and she was back to normal. Because this is Anna, a shunt malfunction is the first thought that comes to mind.
A shunt malfunction is serious. A sudden malfunction can result in a coma or even death.
Rich and I have heard "you'll know it's a malfunction when it happens" from others who have gone through a malfunction. There have probably been three times when I really thought we were at the beginning of a malfunction. Isn't hindsight 20/20?
Shunt surgery would result in an absence from school and activities. Yes, her health and brain are far beyond important but try to explain that to a ten year old. You have to see it from her viewpoint.
An infection in the shunt and/or tract is also a fear, one of which scares the bleep out of me. Think about it. There's a tube that runs from her brain down to her abdominal cavity. Infections can easily travel up that tube.
So here's a story for you. We know another family with a little boy, Anna's age, with spina bifida. He was having problems with his shunt and underwent surgery, here in Boston, for a revision. He was in the hospital for months. This was many years ago and I cannot recall if it was three or four or five months but it was a ridiculous amount of time to spend in the hospital. Basically, they couldn't get the shunt to work properly and he suffered from infections. It was a nightmare for the family and goes to show that you really don't know what can happen. At the end of the day, you say a quick prayer of thanks that you made it through the day.
Anna has had the same shunt for more than ten years now. Her neurosurgeon has told us that maybe we never have to revise it - why mess with something that's working? - or maybe he revises it before it has a chance to fail, considering that shunt was placed when she was a newborn. I say it all the time but that shunt feels like living with a time bomb. Last December, Anna had an updated baseline MRI on her brain/shunt. If her neurologist suspects the shunt isn't working properly, a new MRI will be compared to the baseline MRI.
(I'm obviously not a medical professional and I write of our experiences. Spina bifida, hydrocephalus and shunts can vary person to person.)
4 comments:
I'm curious as a fellow SB mom. You indicate that Anna's shunt is monitored by a neurologist. I would have thought the shunt and Anna as a whole would be followed by a neurosurgeon, as they are usually the lead doctor for our kiddos, and the ones that place shunts. Could you clarify further the role the neurologist plays in Anna's specific care?
That was a typo!!
As another SB mom, our surgeon told us that headaches will be accompanied by photosensitivity, that would tell us whether it was a plain headache, or a malfunction. I’ve often wondered whether or not Anna has shunt issues due to her dislike of photos being taken. The flash can be quite painful to someone who is photosensitive.
We hadn't heard that about the photosensitivity. Her MRI from 10 months ago was read by her neurosurgeon and was all clear. She's been doing the no photo and video thing for 5 years now. I think she's just being a bugger - haha. I hardly ever use my flash now too, and Rich doesn't have a flash on his gopro.
Someone we know told us that their daughter's vomit was different. That's how they knew it was a malfunction.
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