What is Arnold Chiari Malformation
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain.
Arnold-Chiari Malformation II occurs in almost all ch...
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My daughter was diagnosed with Arnold - Chiari malformation when she was 4 years old and has not had any symptoms until now. She is now 15 and is having neck pain and headaches. Medication prescribed for her headaches helps somewhat, but not always. We saw a NS and he is recommending that she have decompression surgery. He cannot say for sure that the neck pain and headaches are from the Chiari, but that she may be showing symptoms from the Chari now. She does not have any other symptoms. We are going to see another neurosurgeon in November. My daughter wants the surgery to relieve her pain, however, our concern is that this may not work and that the surgery is risky. Has anyone with a child experienced this and have they had the surgery?
Posted on 09/12/09, 11:09 pm |
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I myself have had the surgery. Although I was not a child, I will tell you to be patient and wait for a second opinion. Make sure you seek out a competent neurosurgeon.
There are many things that can cause these symptoms in your daughter. There are also many different ideas out there as to what and when one should have a decompression surgery. It is no small thing. In the end you might find yourself confused as to which direction you should choose. I would recommend you learn as much as you can on your own. Then you must follow the instincts that the good Lord gave you as parents and follow that path. Remember this; although your daughter is suffering, there is no immediate urgency to have surgery if it is from the Chiari. Better to endure it together until you get all your questions answered. God Bless 
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To brkndad:
Thank you so much for the advice. We are going to wait for the second opinion, it is just difficult waiting to see this pediatric NS when my daughter is in so much pain. He is apparently pretty good, as it is taking months to get into to see him.
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I'd also say try to listen to your daughter and see what she wants and use that when making your final decision. She's the one hurting. The surgery does have different outcomes for differnt people. It helps some and does not help others. It is a painful surgery to recover from but I would not change having it and I go in Tuesday for my 2nd one.(just because my first doc didn't get it all the first time, wasn't a good doc and didn't get a second opinion) I have 5 children and if one of them were having the symmptom your daughter is having and wanted the surgery I would find the best doctor I can get and let them have the surgery because I know the relief it gave me. Good luck with such a tough decsion and may God bless you both.
withcrazykids
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