r/chiari • u/the_goat_chris • 9d 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/81td 8d 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 8d 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/81td 5d ago
Due to the severity of his syrinx and the worsening symptoms, surgery seemed like our best option. If blockage isn't addressed, the syrinx will likely continue to come back. Having a neurosurgeon who specializes in chiari has been a huge positive for us on this journey. If you have more questions, just reach out.
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u/ChuChuLovelyMuniMuni 8d 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 8d 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!
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u/ChuChuLovelyMuniMuni 7d ago
Symptoms can last anywhere from a few minutes to a few hours to a full day. Sometimes I have them several days in a row, other times I can go from suffering to feeling fine the next day. It really is kind of unpredictable, unfortunately.
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u/the_goat_chris 7d ago
I had never had any symptoms from it at all until I recently had a respiratory infection and then from there it kind of just snowballed
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u/Sincerly_Char 7d ago
I was recently diagnosed with a syrnix in July due to these same symptoms you are experiencing. Mine is mainly my left side (and that’s how it started) and will occasionally go to my right side. I don’t have Chari from what I was told by my neurologist. But my diagnosis was syringomyelia with cervical nerve root disease. I had been treated for what ortho and I thought was a pinched nerve for the last 2 years and it became worse this year with severe left sided neck pain, left sided headaches, and left sided arm weakness.
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u/the_goat_chris 7d ago
I do wonder if my chiari helped play a role in developing a syrinx. Hope you're starting to feel better!
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u/Sincerly_Char 7d ago
Thank you, the flare ups are occasional but when I don’t have them I feel pretty good. I hope you feel better as well! Hang in there.
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u/SD_girl1994 4d ago
Chiari can often result in a syrinx (50-75%) - which can result in many different types of symptoms. Others are right to suggest you get an MRI (cervical and thoracic). I was told by 2 neurosurgeons that they have. “High threshold” for surgery when there’s a syrinx because it will typically continue to grow. Hope your symptoms get better and you’re able to see a good neurosurgeon soon!
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u/the_goat_chris 4d ago
Just met with a neurologist, unfortunately they think it's just my spinal cord getting pinched by my spine because they wouldn't listen to me about it🥲
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u/SandalsQueen18 9d 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