Question about low-lying cerebellar tonsils in child

[Jpooh]

What exactly is a low-lying cerebellar tonsils 4-5mm in an 8 year old child who has headaches that are only in the back of the head?

Thanks

[sassy123111]

My 3 yr old daughter started having seizures back in Feb of this yr. We have had several EEG's and finally she had her MRI done last week. Her MRI results showed borderline low position of the cerebellar tonsils. I called to talk to her neurologists, but talked to his nurse instead and  she  told me that it's normal, and nothing is wrong with her MRI. Can anybody give me more info on this please.Thank you

[selmaS]

Yes...an 8 yr old does not know how to deal with the pain will be grumpy...so am I  at my age it is normal for those with pain to be agitated....and being in pain sooooo much will tire u out,

"selma"

[Jpooh]

I took my daughter to another neurologist and he diagnosed her  with Chiari 1 and Megalencephaly. He wants her to go see a neurosugeon, so we are in the process of doing that.
I do have a question for you. Is it normal for someone with Chiari 1 to be grumpy and tired all the time?

Thanks,
Juanell

[selmaS]

Hi...I am not aware of a Dr there, but here is a link to our list...use the list as a way to start research on the drs...it is at least somewhere to start.Not all drs on the list may be true chiari specialists, but members here have used and like them....find one u like and be advised u may have to travel to get to one.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[Jpooh]

I'm so mad right now! Arg.. Took my daughter to the nerologist yesterday this dr, was a quack. He read the report about her Cerebellar tonsils being 4-5 mm below the fm and did not even want the cd of her MRI and Cat scan. He told when I asked him if the cerebellar tonsils can possibly descend and he said "I don't think so" I also told him that my grandfather had them too anf he totally blew me off. He even told my daughter that she looks SEXY in her glasses.. WTH! He also said that it's not Chiari eventhough she has low-lying cerebellar tonsils and has daily headaches, blurry vision, cold feet, ect... He said her headaches are from a pulled muscle. I'm so frusteratd.. I really think that I need to find a Chiari dr. Do you happen to know any here in Virginia?

Thanks,
Juanell

[selmaS]

Hi Juanell,

Yes, the tonsils can descend or herniate further ....they can do so very slowly over time or very rapidly...so she should be monitored if a chiari dr says she is not a surgical candidate at this time.

If she has ne changes in her symptoms she should be seen ASAP.

I am sure ur DD does not have a syrinx in the cervical area if noted on the MRI, but a syrinx can form in other areas of the spine and MRI's of the areas should be done to rule that out as well...thoracic and lumbar areas.

I would suggest u see a chiari specialist to see exactly what is going on...overcrowding is something they should look at closer and not the size of the herniation.

"selma"