MRI & EEG

Emma had her MRI yesterday to check out her brain. The results were sent to Dr Davies, who responded quickly. I'm so happy our new hem/onc is including Dr Davies, and that we were able to easily get her take on things, too.

s u m m a r y :

1) No brain lesion.

2) No brain atrophy.

3) Small amount of swelling/edema in the same area of her brain that they would expect to see involved with seizures.

4) A bit of her spinal cord was caught on the MRI, and they saw a syrinx (fluid-filled cyst).

d e t a i l s :

1 & 2) Dr Davies says Emma's results look different than what they are seeing with others with FA when it comes to the lesions and brain swelling.

3) They aren't sure why the edema is there or what might cause it. But they don't think the end result would be the movement issues that we're seeing. They said, if anything, the movement might actually be causing the swelling in that part of the brain. They also said they can't rule out that this won't turn into seizures in the future, especially with how the movement issues have been progressing over time. They went ahead and did an EEG overnight, for about 20 hours total, to see if there were any signs of seizures now. There weren't any.

# 4 : They also found a syrinx, which is a fluid-filled cyst in her spinal cord near her brain. Emma has had multiple brain MRIs in the past, and they never mentioned this (then again, maybe her scans didn't include enough of her neck in order to see this area). This could potentially be a pretty bad thing to have. Tomorrow they will be doing an MRI of her full spinal cord to see if there are any more of them, as well as see if they can get neurosurgery involved. She'll need to be sedated again.

We'll be here for at least one more day. In the meantime, it's been fun to see some of our "old" nurses from our last two stays. In the past two months, we've been in the hospital three times for a total of a month now.

E E G

Photo 1: This was during the process of getting the leads put on her head. It smelled similar to getting acrylic nails put on, due to the glue they used (which was not the same as what they use in the nail salon) in order to keep the leads on her head for nearly a full day.

Photo 2: They gave her a really cool wire ponytail and then wrapped her head like a mummy, so she could sleep more easily.

Here's a random video to show how her arms can act sometimes when she tries to use them. They get especially bad when she tries to use them for fine motor stuff. Like, to open door, she'll sometimes struggle to grab the door knob. Or she'll struggle to push a button, like the spacebar. If it's happening to one arm, and if she trades to try using her other arm, it'll usually start struggling, too, due to the additional control she tries to force on it. Often we'll help when we see, but sometimes I take videos to show the doctors her struggles, and this was one of them that she said I could share. (This doesn't always happen. Just a LOT.)

Photo 3: Also, she's hearing/speech impaired, so when she was little, she learned to express herself via her expressions and that's never gone away. Sometimes she almost seems like a mime when she does things and is unintentionally pretty amusing, like in the photo below. She likes to make faces at her arms when they won't control themselves. haha.

Also, in the photo above, the machine tower behind her (in black) had a camera on it that watched her all night. The computer screen, that we could see from the other side, showed all the readings, as well as the video of Emma that were able to see from the room where they watched her.

Photo 4: This was taken right as they were getting ready to take them all back off.

Anyway, hoping tomorrow we find a few more answers! Part of me thinks we won't and that we'll always wonder what is going on.

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