Helping my son

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Hi everyone. My son is 14 and been diagnosed with Arnold chiari malformation type 1 with syringomyelia (sryinx). Although he had previous symptoms ( I didn't know at the time were associated) it was found incidently via mri for bells palsy. He often loses control of his limbs, suffers headaches, something her refers to as room spin ans bowel issues. It has been confirmed he has fluid on his spine and brain. I'm so deeply worried about this. I've little knowledge of the condition and Google tells you everything worse case scenario. Any advice on how to best care for him with this condition is appreciated

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  • Posted

    Hi,

    You stated your son was tested for Bell's palsy. Does he have Palsy? The symptoms for Chiari are so varied and it is different for each person. Here is a good resource site for u. www.asap.org. Personally, I suffer constant headache,back pain, stomach pain, neck, ear and eye problems. I had decompression surgery in 2014. I'm in the bed as my neck pain is so bad. Hopefully someone else may be able to share some information. Hope u can get some answers.

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  • Posted

    Hello, sorry about your Son, you must be so worried! It's hard enough as an adult to deal with chiari, let alone as a teenager.

    I don't have a lot of advice I'm afraid, but I will say that ice packs on the back of my head/top of neck are really helpful. It doesn't help enough, unfortunately, but it does a little and that's better than nothing!

    Are you on Facebook? There are some fantastic support groups that would probably be very beneficial to both of you. The people there are full of info about the condition. Here are a couple of suggestions for groups to join: The Ann Conroy Trust (also a website) is full of medical info and on the website they have resources for you including best chiari surgeons in your area, and some helpful advice generally. Also maybe join "Chiari Support" and "Chiari Malformation and Syringomyelia: UK Support Group"

    These groups are fantastic for info, support and even a place to rant if needed!

    If you Google "22 Things To Avoid If You Have Chiari Malformation" it will bring up an article giving you loads of advice which you might not be aware of yet. I can't post the link because this site won't allow it!

    Hope some of that helps! I don't want to give out any medical advice as not qualified to do so, but hopefully you'll find what you need. I don't have a syrinx but have Chiari and waiting on a date for surgery. I was diagnosed 2 years ago but put it off until now, I can't cope with my symptoms anymore! I'm still adjusting and learning too. I really feel for you... And your Son! X

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    • Posted

      Thank you so much. Yes I'm on Facebook. Bless you. It's really not a simple illness and I dare say there's some people who suffer from.it feeling totally misunderstood. X

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    • Posted

      You're really welcome! Good luck with it all... Hope you find something that's helpful. It can be really overwhelming, I know! X

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