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Chiari malformation
I just had a CT scan of my brain and a "borderline low lying right sided tonsil" was found. I have had multiple CT scans & MRIs over the past several years and this is the first I ever heard of this diagnosis.
Of course, I had to look it up and discovered also called Chiari Malformation. My is 5 mm which I understand is very small.
I am on aromatase inhibitors for breast cancer and a very painful side effect is awful headaches. My breast oncologist wanted to rule out metastasis to the brain obviously. In her opinion, my brain CT scan was normal. My neurologist (history of migraines after a concussion in 2019) said it could be "genetic" but wondering why it was never found before. I am a bit confused, any thoughts?
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Size does not necessarily matter in chiari malformation always. It is possible that even a smaller/borderline chiari could have an effect, have you talked to a neurosurgeon?
@grass16
I sent a message to my neurologist through the hospital portal to inform him of these results (testing done at another facility)...he just said "it could be genetic", which I understand can be. I will be seeing him in person next month for my usual check up. I had a concussion in 2019 which kicked off terrible migraines, never had them before and still have them on occasion today, that's why I see him. To my breast oncologist this finding is new information, she is in a different hospital portal system so she has nothing to compare this finding to. I checked back to my old CT scans and brain MRIs, from 2019 to present ordered by my neurologist...it's never on such reports except once in a 2020 MRI/MRA where it actually says "posterior fossa: no tonsil present."
So, it seems to me since 2020 to the present 2026 - at some point - this happened to my brain? A "tonsil" developed in my cerebellum?
Concerning to me and not sure exactly what this means...
Thank you for your thoughts.
@briarrose
I also have chiari, they said mine could also be genetic when I started to get mild headache and neuropathy. Mine was 11.75mm and they seemed to think it was unlikely that it was causing my symptoms. Have you been checked for IIH (Idiopathic Intercranial Hypertension)? Do you have leaking out of a nostril/ear? You may need to request an LP. The concussion could of cause trauma and triggered this. This can cause tonsils to sag as well.
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1 ReactionDoes anybody have Chari malformation on here? I’m trying to connect with anybody That knows what I’m going through. I’ve had about five surgeries on my head and neck/ spine all which resulted in the same thing, years later Cartilage growing back and more symptoms occurring & my quality of life is so bad. I just need to speak to anybody that knows what I’m going through.
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1 Reaction@despresangela, you'll find more at this link https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/
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1 Reaction@despresangela
Did they ever put an in dwelling "shunt" inside your skull at all to drain the excessive fluids?
Please reply.
VJ
Hello, my brother has this and he has migraines every so often. about half the month but he still has a great quality of life. me on the other hand with tons of other chronic illnesses, no. but i’m so sorry to hear how this has effected you. can i ask how in more detail?
ASAP.org
Bountiful information on Chiari and/or syringomyelia also you can contact others with same dx. Also have yearly conferences with specialists in both these areas
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