Here is a link to the Chiari Institute.
http://www.chiariinstitute.com/
Gabrielle does not have Chiari. I ask everytime she has an MRI.
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http://www.chiariinstitute.com/
Gabrielle does not have Chiari. I ask everytime she has an MRI.
Crazy MRI results.
So Linden had an MRI when he was 5 months old that was normal. Last month he had an MRI and MRS (which is done annually for Mito patients). They called me with results today. Apparently in the year and a half between the MRIs he developed Chiari I malformation.
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I had no idea that you could "develop" a brain malformation like that. Our neurometabolic neurologist that did the second one, she was amazed that anyone could have missed it so she looked at the first MRI and it wasn't there. at all. So he developed it. Which for some reason just seems crazy to me. But there you go.
He's not a good candidate for surgery because even with decompression he'd still have the autonomic dysfunction, dysphagia, aspiration, etc, cause they were there before the chiari was because of the Mito.
We just seem to have come full circle. I thought when he was a baby that his autonomic dysfunction sounded like chiari, but it wasn't. Now that I think he doesn't have it, he does.
It's just really really weird. I hadn't heard of it developing before.
He's not a good candidate for surgery because even with decompression he'd still have the autonomic dysfunction, dysphagia, aspiration, etc, cause they were there before the chiari was because of the Mito.
We just seem to have come full circle. I thought when he was a baby that his autonomic dysfunction sounded like chiari, but it wasn't. Now that I think he doesn't have it, he does.
It's just really really weird. I hadn't heard of it developing before.
