3yr old is scheduled for a craniotomy. Anyone with experience with this?

User - posted on 04/10/2012 ( 2 moms have responded )

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Last year my then 2 year old baby boy began suffering from seizures. During the testing phase the doctors discovered a large arachnoid cyst near the cerebellum. We were told by several neurologists, neurosurgeons, and specialists that it was very large, but of no concern. Most dismissed it and sent us on our way. We were lucky to find one caring and compassionate pediatric neurosurgeon (Dr. Gary Tye) who continued to monitor the cyst. Over the course of the year it has continually grown and is now a concern. It is putting pressure on the brain stem now, and although he is still asymptomatic (Dr. says the seizures are not related) it is only a matter of time before it will adversely affect him. We are scheduled for a surgery on May 23rd. We must decide between a shunt or a craniotomy. Dr. opts for the craniotomy, as do my husband and I. While I understand that route is more intrusive and risky than the shunt, we aren't thrilled with the results of the shunt research we have done. Does anyone have any experience with either of these? I am terrified and in desperate need of any kind of advice, success stories, or anything from anyone who has been through this? Thank you in advance...

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User - posted on 04/12/2012

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You are probably right that they are both considered a craniotomy, I am still learning. My head is a mess at the moment :) They are two very different procedures, however. One is to drain (or fenestrate?) the cyst by removing a part of the cyst wall and removing all the fluid. The other option is inserting a shunt and it will continually drain down to his stomach I believe. Draining it is the more invasive procedure with more risks, but will allow him to live like a normal little boy assuming it works, and the wall does not eventually grow back together. The shunt is less invasive, but involves a lifetime monitoring and MRI's, as well as worry about the shunt failing and/or developing infection. Either way, they should alleviate the pressure.

Katherine - posted on 04/11/2012

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So....the shunt is draining the fluid and the craniotomy is removing the cyst? Because from what I've read there isn't an either or. The craniotomy is to place the shunt in. Since it is pressing on his brain stem I would definitely have the shunt put in because it would drain the fluid so the cyst can't get any bigger......IF I'm understanding this correctly.

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