Hi all, I just signed up to this forum to get some more information (google wasn’t much help). I had a MRI in order to see a neurologist for my migraines and they he report states a 2.1 CM cerebellar tonsillar ectopia below the level of
the foramen of magnum. Trying to find the meaning of this, Chiari popped up on the search but I most I saw was in the millimeter measurements. I’m confused. I haven’t had a chance to talk to my PCP and honestly, I won’t get anything from him. Sorry for the long new post and any input is greatly appreciated.
Hi there,
I am so sorry you are going through this! I some what new to all this and was diagnosed with 5mm cerebellar ectopia… if you look it up it says 5mm and on is classified as Chiari. Well some of the doctors I have seen say it is not Chiari, except for my chiropractor and PCP. I have seen a horrible local neurosurgeon and a great pain management doc who has been very helpful, but both of these doctors say it is not Chiari and it is not causing my symptoms… Well, with a lot of pain and anger these last 3 months I am finally seeing a true Chiari specialist next month.
You are going to learn that the old method that some of these not so educated doctors use is anything less than 5mm isn’t considered Chiari… well that simply isn’t true. The real Chiari specialist and well educated doctors say the size of the herniation does not matter the patients symptoms do! Join the Chiari Malformation Support & Encouragement (Group) Facebook group. This website and that group on Facebook has helped me out so much. Everyone is so kind and helpful on here and on that page. We are all going through this together and never feel afraid to reach out! I hope I helped some and if you have questions I can try to help with some of the experiences I have had so far. Good luck and stay strong. This is NOT a death sentence, a life long battle yes, but what doesn’t kill us makes us stronger!
Rachel
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Thank you for the response Rachael. I’m still waiting to see the neurologist. My PCP said everything looked normal on my scan (besides my messed up sinus).
I’ve been reading the forums and haven’t seen anyone with 21 mm ectopia. Am I misreading anything?
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Are you 21mm or 2.1mm? All I have read is everything is in millimeter measurements and all of my measurements have been in mm… Have you had a Brain MRI with and without contrast? Was the MRI that you had was it a cervical spine MRI?
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If you convert 2.1cm to millimeters that is 21mm you would have much larger decent of the tonsils! You would for sure have Chiari! Have your PCP order you the Brain MRI with and without contrast, and a Cine MRI to check your CSF flow.
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The report says 2.1 cm that is 21 mm. I had ahead MRI without contrast.
Ok, are the migraines your only symptom? I would for sure research Chiari specialist in your area and take your list to your PCP and asked to be referred to one or even 2 of them so you can get more than one opinion. I cannot believe the radiologist that read your MRI called it tonsillar ectopia! You definitely need to have it looked at by someone more knowledgeable!
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But, some with a more significant descent of the tonsils can experience less symptoms and live normal lives and some never know they have it and then the ones with very small herniations experience a lot of crippling symptoms. As long as your everyday life isn’t affected and you find a good doctor to help you manage with the symptoms you do have, you should be ok! Good luck and keep me posted on what you find out!
Rachel
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