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Children with CM1 and syringomyelia?
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Children with CM1 and syringomyelia?

Since my daughter was just newly diagnosed I'm curious to know about other children and their experience and symptoms with this.
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Hi!  I'm really sorry to hear that your daughter is ill.  Chiari's runs in my family, so myself, my sister and her son all have it.  My nephew had his decompression surgery done when he was 6.  He had extreme motion sickness - running and moving around much made him sick, along with every car ride.  He also had a lot of issues with headaches, hearing loss and clumsiness. He had his surgery done in Seattle and he healed from it amazingly fast, much quicker than my sister or I.  He has some other neurological issues, so it's difficult to tease out how much of it was Chiari's and how much is something else, but some of his symptoms definitely got better after the surgery.

I hope your little one is able to find relief soon.

Tina
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I am so surprised to hear that this run's in your family.  I have done research and never came across anything that states it is hereditary.  I worry because I was in my eary 40's when I finally found out I had it and now my daughter is now in her 30's and is starting to show sign's of it.  Just weird that 3 people in your family would have this.  Interesting.
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  Research is still being done to show how chiari and syringomyelia might be genetic....but, with all the members that have a family history it is hard to not believe it b4 the results come in.....

I have a friend that has it and so does her son.....and I believe my dad has it, but he refuses to get tested....my cousin has spina bifida, and that is on my father's side of the family....so, I am looking at this very closely as I have a DD that I pray does not have to deal with this for herself or her future children.
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My daughter is actually adopted so I don't know if there is a history in her birth family although I don't think so.  This is all still so new - only a few weeks since we have known.  I'll have to ask her birthmom.  

My daughter really doesn't have a lot of symptoms.  She actually had a lot more of possible symptoms when she was a baby and toddler - stiffness in body, dragging leg, clenched fist, ears and eye problems, etc.  The only symptoms she has now is bowel and bladdder dysfunction - and we are not sure that is from the chiaria or the syrinx.  It was just a fluke that it was found on an MRI.  I am wondering if it is possible to have symptoms at a younger age and then have them "disappear" or change into different ones.  She is actually extremely active - probably everything she shouldn't be doing - climbing trees, gymnastics, dance, running, trampoline, etc.  We haven't seen a neurologist yet.  We are waiting for Mayo Clinic to call us as soon as they get all of her records.  I've just started doing research on all of this and admit I sometimes think I'm in a bit of denial that she has this.
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  I don't think the symptoms go away, we  may adjust to them, and they do cycle,...and at different stages of growth pressure points will be on different areas causing diff symptoms.....so it is an ever changing thing.

So many times I have said this, and will again, but if u have symptoms or a pain after u cough, laugh, sneeze...how would u know it is not normal if u always had it? So when u ask some1 with chiari if they have symptoms, they may say no...until  they realize what is normal for them really is not normal.

   "selma"
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