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Syringomyelia without Chiari?

Purploholic

654d

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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Syringomyelia and syringobulbia

Disturbance of skin sensation

Feeling of choking

Chronic Generalized pain

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Top reply
    • Ghost125

      411d

      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.

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    • Ghost125

      411d

      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.

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    • lisalocket

      434d

      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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    • ShannonGarner

      648d

      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

        646d

        @ShannonGarner 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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    • GirlyCaptain79

      654d

      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

        654d

        @GirlyCaptain79 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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        • Heaven197987

          654d

          @Purploholic I also have no chiari and have an elongated sryinx in my cervical and thrastic spinal cannal. They told me it's congenital they just watch with yearly mri.

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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