Chiari Malformation Community
A mother's concern
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A mother's concern

My daughter who is 16 years old did an MRI and the result is a Mild Cerebellar tonsil ectopia (3mm).. how serious is this ?
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Ok, so I am TOTALLY new to the whole Chiari world, so please, please do not take my opinion too seriously.  Have you asked your daughter's doctor if the ectopia is the same as a Chiari Malformation?  Ectopia means a displacement, so it could by definition mean a herniation, but myself not being in any way a doctor, I would not know if that means a Chiari Malformation.  I have read that a CM is classified a a herniation of the Cerebellar tonsils by at least 3-5mm or more.  At the same time, I have also read that the mm amount does not matter necessarily that it depends on the symptoms your daughter is experiencing and if there is a syrinx (build up of CSF) or tethered cord present.  Also, if there is a blockage of CSF around her brain.  Is your daughter experiencing symptoms that prompted her to get the MRI in the first place?  I would suggest talking first and foremost to your doctor or a good neurologist and maybe a Chiari specialist depending on your daughter's symptoms.  Again, I am new to the Chiari world, so get the opinions of other people that have been through all of this longer as well.  By the way, welcome to the forum LOL.  Good luck to you and your daughter!
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Hello,

Thank you for posting and welcome to the forum.

Your daughter has an Arnold Chiari Malformation. 3mm is very small but can cause symptoms no matter what the size. May I ask why she had an MRI. Was she having problems with something else and was this just an incidental finding. Is she seeng a neurologist and did he order the MRI?

Chiari is not life threatening but it is life changing if it causing symptoms. You will need to find a chiari specialist as most dr.s are not well versed in chiari. There is a link on one of the pages that lists specialists. There would be other tests that would be run to find out if the chiari is causing any problems.

There are many knowledgable people on this forum and they are all willing to answer questions so please feel free to use their knowledge and experiance to help you with any concerns you have.

Best Wishes
Dawn



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Dawn and Mama2two babies have given you good basic info and advice.

At the top of the main page, there's a info sticky. Read that and it will give you a Chairi primer.

Generally, a herniation under around 5mm, is considered Cerebellar Tonsil Ectopia - or Chiari "0". Some doctors say that a herniation of 3mm is incidental and won't cause symptoms. Others say it can. Either way, the herniation can (and most often, will) grow. Make sure you have a Chiari Specialist and that she has regular MRI's.

Like Dawn said, Chiari isn't considered life-threatening, but it can be life-altering.

There is a thread here that lists doctors that we have had good dealings with. Check it out and see if any are near you. I know some people are in Florida and around the Gulf shores, so hopefully one of them can guide you to a good Specialist.
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