Re: In need of prayers please :(/

[Guest guest]

Hi ,

I am happy to answer your questions, you see Chiari is very rare , and is

often misdiagnosed as MS.

These are going to be in laymens terms as I am not a doctor , lol.

Arnold Chiari 1 malformation : Basically the base of your skull is to small (

generally not even noticed visibly) which causes part of your brain called the

cerebellum tonsils to herniate and fall down into the spinal canal.

This acts as a plug , and prevents normal spinal fluid to flow to the brain ,

This can and in my daughters case did cause syringomyelia ( syrinx)

Syrinx is basically a fluid filled cyst in middle of spinal canal , which can

and in her case did cause nerve damage, her syrinx is beaded like a pearl

necklace and goes from C2 - bottom of spinal canal ,

You can also get syrinx from trauma to back , whiplash , and tumors.

In Dani's case it was caused by the Chiari.

She underwent brain surgery in July 2005 , in hopes if they removed the

cerebellum tonsils and unplugged the hole that the syrinx would disappear,

unfortunately it doesnt look like it worked as her syrinx is growing ,

The syrinx in itself can cause numbness in extremeties, loss of bowel /bladder

function , paralysis.

Dani already has the numbness in her upper half of body ( right

arm/hand/shoulder/upperback/skull/face)

Dani was absolutely normal until 3yrs ago when she had a bad fall ice skating

( her first and last time ) and her whole body went numb.

Ever since then she has been having numbness issues in right hand and

progressed to the rest of right side.

THE ONLY way to detect Chiari is with an MRI , which she finally had in May of

this year.

On a side note , they are trying to figure out if in fact it is genetic,

I do know that not only does Joe ( my husband )have colon cancer ,but he also

has a syrinx in spine ( not sure if he has Chiari he wont go back to doc)

This is probably way more information than you wanted lol

Have a Very Merry Christmas and Happy Hanukah

sftfemme@... wrote:

Deb,

I was wondering if you could explain what a syrinx is and also what is

Chiari. I hope I'm not imposing but I just don't know what it is and I'm kinda

new

to the group.

I hope your daughter starts feeling better very soon.

Thanks

[Guest guest]

Thank you for telling me all about it. So can they remove syrinx? I assume

its not just one cyst but many going down her spine.

I wish you all well and hope you daughter is able to enjoy her christmas.

[Guest guest]

Deb, I am {raying so hard for Dani and that it resolves quickly

without her having to endure any more surgery. Praying o hard that

your whole family gets healthy and stays tht way. Merry Christmas!!!

Love, Ingrid

> Deb,

>

> I was wondering if you could explain what a syrinx is and also what

is

> Chiari. I hope I'm not imposing but I just don't know what it is

and I'm kinda new

> to the group.

> I hope your daughter starts feeling better very soon.

>

> Thanks

>

>

>

>