Daughter diagnosed :(

[Jemwill85]

My 6 year old daughter was diagnosed with chiari 6 months ago. I know size doesn't matter but hers is 22mm. Seems everyone else's is smaller, I'm yet to read of someone with a chiari bigger which is making me uneasy

[Jemwill85]

Thank you guys your all awesome. We go to see Ellie's geneticist on 28th October so I'm going to discuss it with her and see hat he thinks x

[missy101324]

my 5 yr/o daughter just had a decompression and removed her c1 vertebrae. her herniation is 17 mm. from the time she was diagnosed and had surgery within 2 months.because it was causing so much pressure. feel free to ask any questions..

[selmaS]

   I do not understand all the ins and outs of this condition or how the brain works, all I do know is quite a few with Chiari also have epilepsy....so it may be the Chiari....

I also know lesions or white matter can also be a result of extreme headaches....

I agree all very confusing.

[Jemwill85]

I'm not sure if its related, on the MRI we were looking for changes in the brain to support her epilepsy diagnoses, Ellie has left sided seizures but we could only see "white matter" on the left side of her brain (this means its not the white matter that caused the epilepsy because the "white matter should be on the right side of the brain o be the trigger to her seizures) all very confusing x

[selmaS]

  I understand, and I am sure frustrating to find the right care to help her....We do have a list compiled by the Ann Conroy Trust for UK Drs that treat Chiari....I can not say they are all specialists, but worth using to research a few.

Did they ever suggest the epilepsy could be from the CM?...Just wondering as we do have a few members that developed it post op and some had it prior to surgery....with no other related  conditions.

[Jemwill85]

I should  also add a few other things, my daughter (Ellie) has a condition called macrocephaly cm syndrome, which means she has a large head, and is larger all down one side of her body. With the syndrome comes hydrocephalus. (Ellie has extra fluid on her brain but its within normal ranges apparently) she also has epilepsy (the most recent MRI was to see why her seizures had started again after 5 years seizure free), special educational needs. Which makes her telling me she has headaches extremely difficult. She tends to answer "yes" to everything. Also because Ellie's only other MRI scan was when she was newborn we can't compare if she's off balance because that's Ellie.... Or if its because of the chiari. Ellie only started to walk at 3 years old so the chiari could have already been there. (Ellie can walk but tires easily and uses a wheel chair)
Should also add we are from the uk!

[selmaS]

  If she has compression of the spinal cord then u need to look into another NS and find out just what is going on....

As I said the length alone is not as important as what else is there, compression, obstructions etc mean more to the DX then how long it is.

Waiting to see if a child in pain gets worse to me is not right.....find a Chiari specialist that works with children....it may be a few weeks to a few months but it is better then waiting a yr to see what this other Dr will or wont do.

[desertstorm2009]

Hi Gem....
Sent you a private message. Good luck and god bless :-) Lisa

[Munchies2012]

By saying c2/c3 it means the herniation reaches to those bones in neck. Mine is 20mm and my report said something on same lines about being reaching c2 I saw my mri and the end of my herniation reaches the middle of c2

[Jemwill85]

My little girls neurologist said it pressing against her spinal cord, her doctor was confused at to why the neurosurgeon didn't decide to operate because it so pressed up against it. He decided to wait 12 months to see if her symptoms get worse and if the chiari grown. The neuro surgeon said its c2/c3 whatever that means x

[selmaS]

  Hi and welcome to the Chiari forum.

Iam so sorry ur DD was DX'd with this condition....and I understand it is hard to not look at a large herniation when it is in ur child...but think of it this way which may help.

Imagine the herniation like shoestring licorice....and imagine the foreman magmum that the herniation hangs thru is a funnel.

Now in stringing the shoestring licorice in the funnel it will still allow liquid to flow no matter how long the licorice is....BUT if the herniation was wider and more like an upside down gumdrop and not very long placed into the opening of the funnel can cork up fluids....

It is this obstruction that can cause more issues then the tonsils being long and thin.

So u need to know, what type of issues are going on, does she have an obstruction to flow, what symptoms does she have, and does she have ne other related conditions that could be causing the symptoms?

Know u r not alone and we will help u the best we can <3