Spinal MRI

After Emma had her brain MRI earlier this week, several of you on Facebook mentioned she might have Chiari Malformation due to the syrinx that they found. The doctors had said she had a flatter part to the base of her brain, so I wondered if that might be it. I asked them about it yesterday morning. It turns out she does have a Chiari, a mild one. It's one of the main reasons they wanted to do the spinal MRI. (They just hadn't explained that to me at the time. Probably didn't want to add any worry until they knew, since Chiari Malformations can also be harmless.)

They did the spinal MRI yesterday, and here are the results:

• Chiari

• Syringomyelia (syrinx, or a cyst, in her spinal cord)

• tethered cord

• Scoliosis (we knew about this)

• a couple fused vertebrae (we knew about this)

The neurosurgeon came in afterwards and explained the results. He's not sure if the syrinx is there because of the tethered cord or because of the Chiari. He's also not sure if the syrinx has been there all along, and doing nothing, or if it's worsening. He's requesting previous scans from three other hospitals (Scottish Rite, Cincinnati, Sloan Kettering) to hopefully be able to compare and see. He doesn't think her movement issues are caused by any of this. Then he wants to review those scans, chat with hem/onc and neurology, and then let us know what he thinks we should do. We'll see him again in a couple weeks.

He repeatedly said, "Emma has a lot going on. Like, a lot. So much in her past and so much now." Due to her rare disease, it's always a relief when a doctor makes it clear he's calculating that all in.

He ordered a CT scan as he walked out, which was kind of funny because Emma had juuuuust come back to her room (the main hospital room) from the MRI and was almost fully awake now, just to be told, "Hey, get in the wheelchair, we're going again." She looked at me like they were all insane. haha. (She gives really good looks, so it was hilarious.) Luckily they didn't need to sedate her for the CT, since it was really quick. He said he wants a better look at the bones in her head in case they decide to remove a small section of bone in the back of her skull to make more room for her brain.

The pink arrow shows the syrinx in her spinal cord (the white oval shape):

It feels like we're peeling back layers of an onion to figure it all out. She's had so many symptoms through all of this. In addition to the digestive and movement issues, there was the weird throat issue. Where her throat would swell sometimes to the point she could barely eat (like cream of wheat would take her two hours to eat). Then other times it would feel like her throat was collapsing when she would lie down. We assumed that was part of whatever was going on with her digestive system, but now I'm wondering if it was the syrinx. The location of the syrinx lines up with where the swelling was in her throat. Maybe it's not that, but it makes me wonder. She also has had a lot of pain in her back and neck, some eyes issues, and then a lot of cognitive issues (but that's been going on for a while and is also a story all of its own).

We were told we could go home after the CT scan, so it was a big flurry of rushing to get out of there. We arrived home last night. Oh, and they also took her off of the Buspar in case it was the cause of the movement issues. Things haven't improved, yet, but it's only been 36 hours. So, fingers crossed. If this doesn't fix it, I think we're stuck with a movement disorder caused by unknown reasons. We'll be starting physical therapy soon to help her.

Here's a cute little panda stuck in the mud. Just kidding. That's her tethered cord. She's *thrilled* it looks like a panda.

So, that's where we are with things. I'm hoping all of this starts making more sense soon. Thank you all for the comments, love, and support. It means a lot.

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