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Crazy MRI results.

765 Views 6 Replies 5 Participants Last post by  usolyfan
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.
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.
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Here is a link to the Chiari Institute.

Gabrielle does not have Chiari. I ask everytime she has an MRI.
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so is it normal for it to develop like that? I just thought you were born with it or you weren't.
How strange. I'm sorry that it's one more thing . . . .
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Hm. I also have never heard of "developing" chiari. scratching head.

I know very little about it...but his aspiration and dysphagia have gotten worse, haven't they? At one point he was eating some by mouth, wasn't he? Is it possible that with decompression they could get him back to at least less aspiration and dysphagia? Something worth asking I suppose.

How strange. Now I want to google it to see how often it develops like that.

There are three main types of CM. CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized.
Thats about all I really know about it. Thats why I ask after every MRI.

What other conditions are related to Chiari malformation?
Other Chiari-related disorders treated at the Chiari Institute include basilar invagination (protrusion of the upper end of the spine into the skull); craniospinal instability; intracranial and intraspinal cysts; tumors of the cerebellum, brain stem and spinal cord; spina bifida; spinal cord tethering; hydrocephalus (a buildup of CSF in the cavities of the brain); and pseudotumor cerebri (chronically raised CSF pressure).
I didn't realize Chiari was acquired. I thought it was evident at birth and that symptoms manifested later on. Dd has Chiari II.
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