Chiari Online Support Group

Worried mom

My daughter is 5 years old. Her symptoms are as follows:
Constant headache which flare up into horrible “migraine” . Visually can see in eye with eye appearing smaller than other. For over 2 months now. But can track headache complaints back over 2 years.
During flare up light and sound sensitivity.
Dizzy spells
Vision blackouts.
Double/blurry vision
Learning problems/information retention problems:
Took 2.5 years learn count to 10
2 years to write and spell name
After 2 week break from school has to be taught again to write numbers 1-10.
Memory problems:
Eats breakfast and 30 mins later ask what’s for breakfast because she forgot she ate.
Forgetting gma is gma and calling her auntie. But later remembers who she is.
Forgetting that she just got a bedtime hug and kiss 5 minutes before and being really upset that I didn’t give her one.
Receives speech therapy in school.
Raises hand in class to add to discussion but then proceed to talk about something totally off topic.
MRI says:
There is a slight protrusion of the right cerebellar tonsil below the foramen magnum, approximately 3 mm, consistent with inferior cerebellar tonsillar ectopia.

Neurologist says this has nothing to do with her symptoms. Is treating her for allergies saying this is causing headaches.

I do not agree with her. Anyone else experience these symptoms at 3 mm? As she grows will it protrude more and become chiaria malformation? My daughter suffers. It is Sunday and she is so scared to go to school tomorrow because her head may hurt to bad… I am scared for my baby. Any and all ingredients really appreciated.
Jeara

I am so so sorry to hear you are going through this and I can not imagine how difficult it is for you as a mom. I would 1000000% seek another opinion by a Dr. who specializes in Chiari because I have less than a 3mm descent and have horrible Chiari symptoms with headaches and I have heard about cognitive and vision also being problems with Chiari but I’m not 100% sure. I do know though that Chiari exists at a less than 3mm descent because I’ve heard lots of stories and read things about how the amount of descent can be very minimal and still cause unbearable symptoms. I would definitely see another neurologist or surgeon who specializes in Chiari and may bring you more help. I hope this helped a little and I hope you can get help for your daughter xo

Thank you so much for your reply.it is very frustrating to watch my little girl and know what is causing it but not having her neurologist back me up in it. It is very frustrating that I can find study after study that says yes this small 3 mm protrusion can cause the symptoms. I am trying to find someone, we are in Colorado and she has Medicaid so hopefully I can find a specialist who will take it.

Hi Jeara
As a chiari patient I know how difficult it has been to get answers (besides take a pill and take a nap). I read your post yesterday and I have been thinking and praying for you since. I wish I had some way to help you in this journey. It breaks my heart to know there is a 5 year old suffering the same symptoms that I as an adult struggle to find answers.
My chiari has changed over the years (first diagnosed in 2000), and I’ve had two decompression surgeries. My last measurement was 16mm. I’ve always read that the size doesn’t count when it comes to symptoms. You daughter is so young, so to me a 3mm could be comparable to my length in an adult body.
Depending on your location, there has to be a chiari specialist somewhere in your region. I drive 300 miles to the clinic in Ohio. When I started there, they had me submit my scans/records etc for review. Then they did a phone consultation with a nurse to determine if I should come down for testing and a chat with a surgeon. That was free and they didnt bill my insurance.
The day I went there I had a Cine MRI along with a regular MRI.
http://asap.org/index.php/disorders/cine-mri/
I think that has been the single best test to explain my symptoms. Keep that in mind as you weed your way through specialist and neuro folk.
Your daughter is blessed to have you as her advocate. Soon you will get your answers and then be able to make a plan to manage her symptoms whether it be management or surgical. Hang in there! Please keep us posted on your journey.
Diane K

Thank you so much for all your words of wisdom and prayers. Took her to
doctors today, her occipital lymphnode on left side is huge and very
painful. She asked what came from MRI, because she never received a copy of
her results which the neurologist said she sent. I told her and she looked
at me like I had two heads when I said neurologist said this was not
causing any of her symptoms. So she is going to put in a referral for a
second opinion.
It is very frustrating.
Jeara

DM KAISER

The person with the 16mm… question did it grow as you have aged??? My daughter is 22 months old and has a 14mm… I’m just wondering if hers will grow :frowning: