(What is Chiari Malformation? You ask...well according to the National Institute of Neurological Disorders Website...
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. )
Rowan's is a "significant" type one.
Rowan was put under for the MRI to get clear, still pictures, and he did great. He had nothing to say to the nurse when he got out, UNTIL she offered him a popsicle, then he chatted her up about his popsicles at home. He was especially surprised when she offered him a second popsicle, he never gets that at home!
Our MRI today was to determine if it looked the same, worsened, needed attention, etc.
After the MRI we were able to meet with the neurosurgeon right away. He said that as he had the scans pulled up 2 of his colleagues walked by and both commented on the significance of the chiari and agreed that surgery would be necessary.
He presented the following for us to consider...
Although Rowan does not have 'headache' and other types of symptoms now, he certainly will in the future if it is left. It can/will worsen over time and could cut off cerebral spinal fluid from flowing. Could also cause sleep problems such as apnea, snoring, etc if it worsens as it is a sleep center of the brain.
The surgery is easier done on a child, much more difficult if the child's age gets into the double digits, and is extremely hard on adults.
He can not say for certain that this is the cause of some of Rowan's delays, but there could be a chance that some of his problems would improve after surgery, but he believes with all the support and help Rowan is getting he would make improvements anyway.
Having the surgery sooner would mean not having to return for yearly MRIs to see if the problem has worsened.
He said that he would have no problems with doing the surgery on a child Rowan's age, and he has never had a major complication doing this surgery.
The surgery would be cutting into the back of head and removing a piece of the skull, giving that part of the brain more room and relieving pressure. The bone would be replaced with a patch.
Hospitalization would be around 5 days, with 7-10 day in home recovery following, and 4-6 weeks to resume heavy activity. The nurse we talked to on the phone when we called with more questions said that for older kids this would mean keeping them out of sports etc for those weeks. For a little guy like Rowan it would mean trying to keep him from heavy playing. A benefit to a little guy having it is she said the little ones can often self monitor, and if something isn't comfortable for them they won't do it. I asked about water and swimming and she said in the weeks immediately following they should not be doing that so a lot of people opt not to do this surgery during the summer if they can help it, especially if they are "cabin or lake" people.
So, currently we are in the process of deciding when to go about this. With no clear advantage of waiting, our guts are telling us to go ahead, but we have a call into the
neurosurgery department to see what the Dr and Hospitals scheduling availability looks like in the coming months. We'll see where we go from here.
You can read a couple of our older blog posts on Rowan's condition here if you need to get up to speed:
http://babyrowansblog.blogspot.com/2011/07/meeting-with-neurosurgeon.html
http://babyrowansblog.blogspot.com/2011/06/chiari-malformation.html
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