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Purploholic

Updated 10mo ago

Syringomyelia without Chiari?

Recently dx with syringomyelia in my cervical spine. My brain MRI was normal. Has anyone come across having syringomyelia without Chiari? I have a ton of symptoms that I feel are connected to this. Doctors say the syrinx is not a concern at all nor would it cause any of my mobility issues, pain, weakness, numbness etc.

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GirlyCaptain79

2y

Hi, I am the Missouri rep for the chiari and Syringomyelia foundation. You need a new dr, are you in the United States?
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Purploholic

2y

yes I’m in CA. Is this something you’ve come across with people who have normal brain MRI/no chiari but still have syringomyelia? I tried looking online but couldn’t find anything to validate my situation. And thanks for responding
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ShannonGarner

2y

I have syringomyelia without chiari. I was diagnosed in 2006. Unfortunately I think the majority of us with this disorder that isn't surgical, have faced these doctors. I'm not sure if it's because they don't get paid for a surgery, incompetence, or just sheer laziness. I have started losing mobility in my right leg but yet they say it isn't related.
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Heaven197987

2y

I think the biggest reason they chose to not use surgical as to wait and see if there's another reason or will it remain in a stable state is because it's poses a high risk to paralyze us. They only want to risk it if they don't then it will become worse.
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lisalocket

1y

I had decompression surgery in 2016. Although syrinx is now clear I still suffer with progressive nerve pain. My consultant retired and the newbie discharged me. So yes you can still have all the symptoms and they can get worse
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Ghost125

1y

I have syrinx t2-t12 and no chiari. They also try to say my symptoms aren't related, but somehow, all of us have the same symptoms.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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