I meant to get on here sooner for this update, but had some things on my schedule this weekend and then I ended up getting a nasty head cold and spent 1/2 of Sunday in bed!
On Thursday, Aly happened to have one of her facial episodes at home! Finally! She was playing her flute and yelled for me, as best she could with a jaw lock. I grabbed my phone ( everyone needs an iphone!) and recorded the episode. Yeah, it was one of the craziest things I've seen. It looked like the whole left side of Aly's face was pulled towards her ear. Her lips were pulled crooked, and her eyelid was stuck shut. It took a couple of minutes for everything to start relaxing and at that point I could see several areas twitching. Poor girl! I can see why it is so frightening! As soon as I got the video, I sent it to the neurologist, whom we saw earlier in the week. She called Friday evening and added a new term to this muscle spasm. Hemimasticatory Spasm. Yeah, nothing ever has an easy name in the medical world. She thanked me for sending the video as it was the first time any of the doctors had seen a complete episode. The good thing is that she is still adamant that it is related to the radiation and should go away without further treatment. If it doesn't, there are still options but we'll let it go for a little while. Hopefully, they will continue to get fewer and farther in between.
I'm glad you were able to get a video and a diagnosis. We will continue to pray that these episodes will eventually fade away. Take Care.
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Jimella
We hope that episodes will come fewer! Hugs to all!
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