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Is cerebellar tonsillar ectopia always CM? And is a Tarlov cyst and CM related?

Hi, I’m a 42 yr old female. I was diagnosed with a Tarlov cyst in my spinal canal last May. I’ve been getting spinal injections for back pain from an L6 (extra vertebrae) and SI disease for about 16 years. I have been dealing with horrible headaches and neck pain for quite some time. Finally because of the leg weakness blurry vision headaches and complete frustration my doctor ordered a head CT. It said Mild Cerebellar Tonsillar Ectopia. Not sure if it’s CM. Waiting for my referral to be sent over and a call from the neurologist. My question is, is it possible for the Tarlov and Tonsillar Ectopia to be related? Oh also there was no hydrocephalus on my scan.
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620923 tn?1452915648
Hi and welcome to the Chiari forum.

No, a herniation of the cerebral tonsils is not Chiari....a malformation of the skull is Chiari, which makes the area too small to hold all of the brain and this is why part of it herniates. It is possible to have a herniation due to injury or another condition like IIH that can cause the tonsils to herniate.
That said, the symptoms are the same and many times treatment is the same.....

Many with Chiari do have a Tarlov cyst....and it appears there is some connection....but not sure if there is a study to show this.

Did you have a trauma to the head or neck?

It is possible that the radiologist is not knowledgeable on how to classify Chiari....so it is something a true Chiari specialist will have to answer for you.
Hi SelmaS,
No head trauma or neck injury. I am so grateful for the information you have given me and what I’ve read on this forum. It is helping me make sure my PCP refers me to the right neurologist who specializes in CM. This forum is helping me be my own advocate. I’ve been struggling for many years. I have all my discs of all my scans to take with me. Thank you so much for your knowledge. Feeling not alone is the best feeling in the world!!!!! Thank you again <3
So glad to be able to help....and you are never alone <3 Keep us updated on your progress.
Had my first Neurologist appt today. I do have CM. My pcp that ordered my CT scan didn’t have my neck done. That being said we’re not sure the length of herniation. He told me they won’t operate unless drop is 15mm. He was quit interested in my Tarlov cyst that in his words is very large. He showed my on my scan were it’s sitting on my nerves. I am having 2 more MRI scans done as well as blood tests for Autoimmune disorders. This Doctor spent a hour and a half with me today. Never had a doctor care that much. Made me grateful, and I feel like he is going to help me. Finally!!!!
I am sorry to say in my personal opinion that Dr is not a Chiari specialist....to say they will not do surgery until the herniation is a certain length is ridiculous...it is not the herniation but the obstruction that should determine surgery or not......
You need a Dr that knows to check your CSF flow with a flow study ( CINE MRI) and one that also knows to rule out ALL related conditions.

I know you like this Dr....but, I am concerned to his experience with Chiari.
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