Posted , 3 users are following.
Has anyone had a chiari in more than one family member I was diagnosed a while back and had decompression surgery, our daughter started to be unwell and had just been diagnosed, she has not seen the neurosurgeon yet any advice!!!!!!
0 likes, 4 replies
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and02895 nicky91073
Posted
They're not entirely sure the gene that it's linked to, but there has been definite evidence that it could somehow be hereditary.
and02895
Posted
nicky91073 and02895
Posted
Kerenza nicky91073
Posted
My family have not been tested (Sister/Mother etc, I don't have kids), but if you hang out in enough support groups you'll see just how many woman are finding out that multiple of their children also have it, as well as the Mothers/Sisters of themselves etc. I'm not sure what the link is but it seems really common to me?
To be fair though, maybe support groups are not the place for unbiased stats, since if you and your family are feeling well, you don't tend to have a need for these groups. It's a very closely populated place for Chiari Problems!
I'm so sorry for your Daughters diagnosis, it's not a pleasant journey. However, at least if they've caught it early, then she will be able to have better care and less likely to have permanent nerve damage etc.
Good luck to both of you, really hope it's not too rough a ride for either of you!