1. < Brain & Nervous System

I have a syrinx and can't find a doctor that knows much about it?

Posted by kritter19 @kritter19, Mar 2 7:15pm

Im desperate for relief in my neck, brainstem area. I am numb in every limb, random Nausea, circulation issues, i am desperate for any direction on how to go about getting an appointment at mayo or anyone who knows a surgeon familiar with syrinx?

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jenatsky | @jenatsky | 4 days ago
In reply to @kritter19 "Thanku for your message.... Is a syrinx a disease?" + (show)
@kritter19

Thanku for your message....
Is a syrinx a disease?

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No it is not considered a disease. It is defined as “fluid filled cavity that forms within the spinal cord. There are many factors that may contribute to its development.

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kritter19 | @kritter19 | 4 days ago
In reply to @dmk "If you go to asap.org there is a list of dr’s on medical board that specialize..." + (show)
@dmk

If you go to asap.org there is a list of dr’s on medical board that specialize they are mostly pediatric neurosurgeons who also care for adults as well. In our case we were told our child’s syrinx ,it couldn’t be drained as they said it would come back again and that where it is located in our child there was no room for a pain stimulator so his pain is managed with medication, and meditation to a degree. Went to neuro pt which has helped too and learned meditation. You can find people to talk with there as well that have same condition

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Do u mind me asking where the syrinx is for you guys? Everything i see seems to be cervical....mine is thoracic and grew 5 times the size it was from 2022-2025

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kritter19 | @kritter19 | 4 days ago
In reply to @jenatsky "No it is not considered a disease. It is defined as “fluid filled cavity that forms..." + (show)
@jenatsky

No it is not considered a disease. It is defined as “fluid filled cavity that forms within the spinal cord. There are many factors that may contribute to its development.

Jump to this post

Thanku so much.

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nancy82415 | @nancy82415 | 4 days ago
In reply to @kritter19 "Do u mind me asking where the syrinx is for you guys? Everything i see seems..." + (show)
@kritter19

Do u mind me asking where the syrinx is for you guys? Everything i see seems to be cervical....mine is thoracic and grew 5 times the size it was from 2022-2025

Jump to this post

@kritter19 mine is from the foramen magnum to my T6.

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kritter19 | @kritter19 | 3 days ago

On mri mine says spinal cord syrinx at level t5-t9 and extends 5cm craniocaudal. Scoliosis seen
That's all i know:(

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