Rapidly progressing Chiari malformation

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in May of 2016, I was diagnosed with Arnold Chiari malformation type I 4-5mm with a variety of symptoms present. Then, at the end of December 2016, I had another MRI showing the malformation at 9-12mm (report read 9mm left side, 12 mm right side). The symptoms come and go in severity and frequency but have not changed much from the time of the original diagnosis. Is this something I should be concered about? It seems to be a rapid progression, doubling in size over a 7month period. Has anyone in this group experienced this and, if so, what has been the extent of your progression? I have four small children and want to be as informed as possible as to what the future of my progression could possibly hold. Is this a normal progression rate?

Thank you!

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  • Posted

    I can't offer much advice unfortunately and know how worried you must be. I just wanted to throw something into the mix though! Obviously you may well have progressed that much, and that needs looking at. However, it's worth remembering that different radiographers give different measurements. You wouldn't think it could vary much, but it does... And when you're talking in terms of millimetres, it can make a massive difference. I'm not saying that you've not progressed as it's entirely possible you have. However, the only person that can really tell you is the Neurosurgeon. Might be worth asking them to compare the scans at your next appointment as this is the only way you'll know for sure.

    Sorry I can't be more help :-)

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    • Posted

      P. S I know how scary it is... I'm at 1.5cm now and it terrifies me!

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  • Posted

    The length of the herniaton is not as serious as how big it is around. The larger it is around can cause it to block the obex (the hole where the fluid comes out of your head) it is common to get a different measurements with multiple MRIs. Everyone is different but chiari remains a progressive disease.

    I had surgery when the pain was too bad for me to tolerate it helped me but because I put it off so long chiari had progressed to Syringomyelia I wish I'd had surgery before this happened.

    No one can tell you how fast you are progressing I'm sorry I can't be more help. Good luck to you

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  • Posted

    Hi there,

    Iwas like you two andhalf year ago, its got worse as tme fast by without surgery I do not think I can handle it - I even became a hosue bound - each time I cough/sneeze I collapsed, so after decompression 7 months ago, I finally have my life back (nearly) drug free -  I can walk do a little exercise it will be 18 -2 years before its got back to normal. PLEASE HAVE DECOMPRESS...MAJORITY OF PEOPLE FEEL BETTER AFTER, but check with your specialist, sometime they do not know though how bad your condition is...so if you think that you would liie to spend quality time with your childremn, best to have surgery though..let your family helping you out = guess whtat - we have Dr Sarah Jarvis here in this site, ask her..she is very excellent - I used to meet her ...she is very knowledgable about everything. GOOD LUCK

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  • Posted

    Sorry I have no idea what is " normal " where chiari is concerned! That's what drives me mad ! No one medical will

    Commit to what we should expect prob because they really don't know

    My chiari is 11 mm and my NS strongly recommends surgery .

    Are your symptoms changing along with the MRI results ?

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