tonsillar ectopia

[deirdre26]

My 8 year old daughter has been very ill for the past 10 weeks, she has had severe night headaches on the left side of her head, alot of falling, blured vision, neck pain. We discover through an MRI that she had tonsillar ectipia with NO Chiari 1 malformation, the report of the MRI Just says :findings consistant with Tonsillar ectopia, represention developmental variation.

my question is this the reason for all of the pain, My neurologist is sending me to a surgen, I am very confused and am wondering would she be symtomactic with just tonsillar ectopia

Please help

[selmaS]

Hi...it all depends on the knowledge of chiari the dr u see has.
My first MRI was scheduled to be w/wo contrast, but while inside they called my dr and saw the chiari and decided not to do it, only to reschedule it later on.

So at some point it may get done, but do not let it get to u if u r told that it has nothing to do with her issues or it's growing pains ect....most of us here have had to go thru several drs b4 we found the right one.

It sounds like ur DD needs an MRI of her cervical,thoracic and lumbar spine...the bladder and bowel issues can be attributed to other chiari related conditions like a syrinx and tethered cord.

All I can say is be patient, know what the drs should be looking for and if they don't...they r the wrong dr!!

I am past the 1 yr mark for my dx...and I have yet to see the right dr, but I am waiting for a call.

"selma"

[deirdre26]

Thanks Selma,

We had the MRI last week, It was without contrast, and only of her head, I have an appointment with Dr Neil Feldstein out of Columbia Pres. in NYC.
Will they do an MRI with contrast to see if this is Chiari? or is the MRI that she had done final?
My neurololgist belives that she has a blockage of some sort in her spine,
I have sooo many questions, waiting till Thursday will be almost impossible,
we ended up in the ER yesterday, she cant seem to urinate and move her bowels or I should say she has the lack of sensation .
so with these symtoms, I cant see how this isnt Chiari Malformation,
the past 3 months has been so terrible for her...

[selmaS]

Hi and welcome to the forum.
I am so sorry ur DD has to deal with this at her age....no age is great to deal with it.
Ur DD must have a mild herniation or one that is less than 5 mm, so most drs do not recognize it.
Was her MRI done w/wo contrast?
Chiari with out herniation can still cause pain and symptoms......U need a chiari specialist in order to get the proper treatment.

Let us know where u live so we can suggest drs for u to research.

I pray she feels better soon.

"selma"