Our 7 yr old daughter just been diagnosed withCM

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She complained of head aches, feeling sick and dizziness. After repeated visits to the GP we were referred to a paediatrician. MRI confirmed fluid build up in the spine - Chiari 1. Still to be seen by a Nuro surgeon. My question is what can we expect from the illness? How do one know if it is a progressive form (will things get worse) or will she outgrow it. She is also recently been diagnosed with being a Coeliac. Hopefully no relation between the two illness...........?

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  • Posted

    I'm sorry your daughter has been diagnosed with CM. I understand that you're seeking out any additional information and are likely frustrated, as any parent would be. My advice is to meet with the neurologist and follow their advice as every patient is unique. Individuals on sites like these often offer you information that isn't accurate or want to share bad experiences. Our 13 year old daughter had the decompression surgery and is now symptom free 18 months later. I wish the best for your daughter.

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  • Posted

    some people can have chiari but no symptoms but like ur daughter i had alot of symptoms they will need to get rid of fluid in ur daughters spine they might do lumber puncture i myself had build up of dluid in brain n had brain surgery every body is different a surgeon will access your daughter first and will reccommend what is best for her hope everything goes well for you all

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  • Posted

    CHIARI: Yes, can and will worsen if the correct treatment is not administered. Most Chiarians seek the traumatic 5 hour decompression brain surgery. Results for said surgery are mostly positive, but most also see their symptoms come back in time. Decompression surgery does not address the CAUSE of the syndrome, but just makes more room in the hindbrain, hopefully pausing some symptoms. Filum Terminale Dissectum surgery does address the CAUSE. Said 45 minute surgery is performed just above the intergluteal cleft (butt crack) and releases the pull of the spine on the hindbrain, treating the CAUSE. I have had both the brain decompression surgery (4 weeks of very limited false hope for me) and the Filum surgery (got me out of bed after 3 years and back to raising my children, loving on my wife, traveling and running the household). Find a Chiari specialist and not just a hospital staff neruologist or neurosurgeon. Chiari is a very misunderstood syndrome, and it took me 7 neurosurgeons until I found the one I needed.

    CHOLEIAC: Most diseases/syndromes can be traced back to some form of inflammation. My daughter has asthma (inflammation) and after putting her on a gluten-free diet did wonders for her asthma. I also am mostly gluten-free and it has also helped me. NOTE: wheat, sugar and dairy are the three main culprits of inflammation in most people, and a simple diet change can really improve the quality of life. God bless

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