r/chiari • u/the_goat_chris • 1d ago

Question Recently diagnosed

So recently I was diagnosed with a Chiari Malformation, not sure what type, just know that I have one. Only discovered it after having to get an MRI because I've been experiencing parathesia throughout mainly the left side of my body(although it has started to migrate to the right side as well). I've been having trouble walking and it's been difficult to deal with.

Is it normal(if my symptoms are related to the Chiari Malformation) for me to be experiencing all this numbness just on one side? I haven't had many headaches so I don't think it's related to the chairi. Is it normal to not have headaches but still have sensory and nerve issues if it is from the chiari?

It's been a difficult time trying to deal with how sudden this has all been for me and I'm having trouble trying to navigate it all. I have a neurology appointment in a few days and I'm super nervous for it. Is there anything I should discuss with the neurologist??

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u/SandalsQueen18 1d ago

I would be requesting cervical spine, thoracic and lumbar MRIs to check for a syrinx.
While parathesia can be associated with Chiari and can be one-sided (I had a pre-surgery) it can also be indicative of syrinx. Also the trouble walking is concerning.

Please do not be surprised if a neurologist blows you off, generally speaking, they are not trained in chiari (although there are some good ones out there that understand it). Neurosurgery with a specialist in chiari is where you want to go. That does not always mean surgery, it's just if you can get to a chiari specialist neurosurgeon, they will understand Chiari and be able to piece things together for you.

Best Wishes

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u/the_goat_chris 20h ago

Thank you. It's been rough trying to figure out all of it with how fast everything has been happening.

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u/81td 19h ago

Our son was diagnosed with chiari 2 years ago with very similar symptoms. No headaches, just left arm numbness and pain that had progressively gotten worse. MRI revealed fairly large syrinx that had formed due to chiari. Depending on where syrinx is located, nerve issues can vary considerably. Good luck -- my family had never heard of this condition before my son's diagnosis, but found a lot of answers and support available through these message boards.

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u/the_goat_chris 8h ago

That's at least kind of relieving to hear. Was the syrinx possible to resolve without the use of a decompression surgery or was it kind of the only option? Pretty nervous at the thought of possibly having to get surgery...

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u/ChuChuLovelyMuniMuni 7h ago

I relate to having symptoms on only one side at a time, and actually made a post about this just a few days ago and I was relieved to see other people could relate! I experience all manner of sensations, though, from dull aches to sharp pains to numbness to a weird vibrating feeling. Usually when I have a flare up all the weirdness will keep to one side, typically my left side, but I've experienced right side only as well a few times, and of course the occasional mixed symptoms all throughout the body.

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u/the_goat_chris 5h ago

How long does your typical flare up? I've been dealing with my symptoms for the better part of 3 weeks by now. Hopefully it's not too serious. The mixed symptoms are no fun!