I'm so happy that I found this site! Some of your stories have already helped me to better understand Chiari from my daughter's perspective. My daughter was diagnosed with Chiari in December 2011. She was in pretty bad shape at the time. She could not run, play soccer, walk down the street, and she was ALWAYS in pain. Also, she vomited almost every morning. Her NS HIGHLY recommended surgery because her CSF flow was only at 50%. The surgery went well. It took about 6 and a half hours. The NS ended up having to do a tonsillectomy on the herniated part of her cerebellum (along with all of the other routine decompression steps) in order to allow 100% flow of CSF (I hope I said all of that right). After her recovery, we saw remarkable changes in her. About 6 months post-op she was pain free, until recently. In the past month she has been complaining of headaches. She does not complain about ANYTHING unless it is really painful, so I'm guessing she is in a great deal of pain. She has also complained of leg pain and tummy pain almost daily. In the last couple of weeks, her left eye looks swollen and bruised. She has also been holding the left side of her head. We had an MRI on December 27th and the NS said everything looked good. Is this normal for the symptoms to return? Is this just something that she will have to live with all of her life? Thank you for reading my novel :) I am just worried sick about my precious little girl.
Thank you, Beeba! Rita goes to a pediatric opthamologist every three months to check pressure and her ROP. She had an appointment in December and we were told everything was fine. I'm going to call the NS on Monday and ask about her symptoms. We were actually relieved when she was diagnosed because I have known since her birth that something wasn't right with her. She is such an amazing kid and I'm so proud of her incredible strength.