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My daughter had decompression for Chiari Malformation
by ladybug01976, Sep 04, 2008 11:41AM
My daughter had surgery for chiari malformation in August 2006 her chiari was 14mm in herniation, she presented with severe headaches, overall weakness. clumsiness, touble swollowing,gagging and overall lethargy.She had started (kindergarden that yr.) She is now in full time special ed classes and in 2nd grade, she is wayyyyyyyyyyyyyyy behind her peers in learning and constantly needs someone to work with her or she completly just goes blank.She can't read just learned a few words at the end of the year like cat,bat,it,the etc and now recongnises the difference and can identify most of her capitol and lowercase letters. Basically finally can write her name where you can tell it is her name and can write if she has a guide to go by.She easily forgets.She still gets severe headaches. Sleeps more than most kids her age going to bed usually around 5 pm and will wake up around 7:00 am but if i don't wake her up she will sleep strait through till about 9. I am very worried about her I almost feel as if was a mistake to take her up another grade.It is almost as if she completly lost everything she learned.She also has another condition cystic Hygroma/lymphangioma , she had some genetic tests that she had done and they came back normal but the doctor wants to see her back in 6 mos to 1 yr to do more testing she said there may be something that they missed are there any other syndromes that both chiari malformations , and lymphangioma runs in that they may have missed or could all these learning problems be due to the decompression surgery?
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Developmental problems are really very hard to diagnose and it would really entail several follow ups and a lot of patience from both the patient's and the doctor's side. I don't think that this is a consequence of the decompression surgery, and we may be dealing with a primary neuro-developmental disorder.
A localized lymphangioma may also not fully explain this, especially if the lymphangioma is just localized to a small part of the brain.
I suggest you continue with the follow ups and I believe the diagnosis can eventually be clinched. Regards and God bless.