As most of you know, Gabriel had an MRI and 24 hour EEG on Tuesday and Wednesday. He had a couple minor complications, making the procedures more challenging for him. We spent two full days in the PICU.
On Tuesday afternoon I received part of Gabriel's diagnosis from the MRI. While I was speaking to the PICU dr, the neurosurgeon happened to walk into the consultation room. It was good timing.
Gabriel has a brain malformation called Chiari type 1. Chiari is when the cerebellum (cerebellum tonsils) descends into the space where the spinal cord enters the spine. This causes pressure on the brainstem, cerebellum, or spinal cord.
Many people with Chiari type 1 don't show symptoms. However, Gabriel is showing active symptoms. These symptoms include: headaches, leg pain, arm weakness, hypotonia, poor sleeping, choking/gagging, balance issues, fine motor problems, aggression, and ear pain. The neurosurgeon told me that he thinks Gabriel is a candidate for surgery.
We have an appointment with the neurologist on the 24th to discuss all the results. We were also referred to the neurosurgeon on the 28th to discuss decompression surgery. The surgery involves removing a portion of the skull to relieve the pressure and might also include removal of the top vertebrae. The neurosurgeon also discussed shrinking the cerebellum with me.
Please feel free to ask any questions or contact us with any comments. This might be an issue that would be appropriate to share with staff so everyone can understand Gabriel. (I can't locate his OT's email to include her.) We would appreciate any school work sent home for him as we continue to work on his medical and education needs. We are grateful for your willingness to help Gabriel succeed.
Oh goodness....I hope the surgery can help Gabriel. You are always in my thoughts and prayers. <3
ReplyDeleteI just want to hug you and Gabriel!! Sending love to all of you.
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