Low lying cerebellar tonsils w/our Chiari

[edbyrket22]

Hi,

My 11 yr old daughter has been having some health issues. They began 3 yrs ago, when she had a seizure as she was finishing her shower. The ER Dr. called it syncope, so our insurance wouldn't cover an MRI. We saw an NL, but it was about a month after the seizure. She had no further symptoms so he ordered an EEG (which showed nothing) and sent us on our way.

Fast forward to last Tuesday and she had another seizure, also getting out of the shower. This time I took her to our PC Dr. He ordered the MRI and an MRA because she is orthostatic.

The MRA shows a possible aneurysm and the MRI showed no findings other than low lying cerebellar tonsils. The radiologist says specifically that there is no Chiari, but from what I'm reading...there is much debate about Chiari.

Her symptoms are fatigue, a recent loss of appetite, syncope, seizures and a very strange nausea that both hurts and makes her feel like she's going to vomit.

Could that be Chiari?

[Jaime2013]

I am no Dr by any means but I have been battling the chiari for 5 years now. First, I am so sorry that you have to watch your poor child go through this. I'm 32 and it *****, but I could never imagine my daughter in my shoes. Second, I find it interesting that the Dr's mentioned syncope. My latest event was blacking out while driving home, which Dr's also called it syncope. So, they say no chiari, and my Neuro said the black out has nothing to do with my chiari.... Yet I have chiari and your daughter has the potential for chiari ailments. Coincidence?  Let me also tell you that while chiari is not rare, it is not commonly diagnosed properly and they don't know everything there is to know. If you need answers, you demand answers. If you need 5 opinions, you get 5 opinions. Does she get dizzy spells, numbness our pain in her neck or shoulders? I don't know about appetite having a role in chiari, and nausea is common but not painful like you describe as far as I've felt. Any ringing in her ears, loss of hearing? Vision  changes? I really hope you get some answers. Poor kiddo.

[selmaS]

  Hi and welcome to the Chiari forum.

I will try to help you understand what Chiari is.....first it is a malformation of the skull not the herniation....HOWEVER, low lying tonsils can still cause the same symptoms as Chiari...and will be treated , or should be treated the same way.

There are many related conditions that should be ruled out, POTS is the first I would suggest since her Dr already noted orthostatic issues...next would be sleep apnea, tethered cord, ICP, Ehelrs-Danlos, and Syringomyelia.

Blood labs for auto immune thyroid issues,low levels of vitamins and minerals....

Some have developed seizures....both pre and post op for Chiari....so it is possible it is related...or just an underlying condition.