Hello all, I am a new member here and advocating for my 15 year old daughter. She was diagnosed in 2010 after having a seizure in school. Of course, an MRI was done and Chiari was discovered. This year I have observed her steadily declining. She has recurrent upper Resp Infections (1-2 a month) lasting sometimes 10 days or more, she had a seizure in June and Feb, she has lost 10 lbs since March, she is exhausted all the time and she has tremendous difficulty spelling. She asks me very frequently if "thank you" is one word or two. She also asks me if "Happy Birthday" is one or two words, she cant spell simple basic words. Her grades are suffering and my all star athlete has lost interest in sports now! Does anyone experience similar symptoms? Especially the cognitive change and seizures?
Mende, I can absolutely say YES to the cognitive issues. I struggle to find the appropriate word to match my thought, sometimes I struggle to find a word at all. Spelling is an issue too. Between my brain and autocorrect it is a miracle I’m able to communicate at all! Word finding and cogenitive issues are common with Chiari. After decompression surgery it’s hasn’t been as rampant for me -unless I get tired. I don’t have seizures so I’m not going to speak to that other than to say there are others on this site that deal with them. Is your daughter seen regularly to keep an eye on the Chiari? Has she had surgery?
Hi Jenn, thank you for your response. In 2010 she had a gran mal seizure in school, same day in the ER she had another. She went almost 2 years without any further seizures. Now, this year she had two. Initially, in 2010 the radiologist diagnosted her Chiari and we went to UMass to see a pediatric neurologist. He spent 20 minutes with us and gave her a clean bill of health and sent us on our way home to NY. Her pediatrician also said it is probably hormonal. Ugh! Her latest MRI showed descent of 6.9 mm. This MRI was done a month ago. She has an appt to see neurologist Dr Chan. (we live in CA now). She will then see (hopefully) Dr Ciricillo in Sacramento who is a Chiari specialist (so I read). No previous surgery.
Mende jcdemar said:
Mende, I can absolutely say YES to the cognitive issues. I struggle to find the appropriate word to match my thought, sometimes I struggle to find a word at all. Spelling is an issue too. Between my brain and autocorrect it is a miracle I'm able to communicate at all! Word finding and cogenitive issues are common with Chiari. After decompression surgery it's hasn't been as rampant for me -unless I get tired. I don't have seizures so I'm not going to speak to that other than to say there are others on this site that deal with them. Is your daughter seen regularly to keep an eye on the Chiari? Has she had surgery?