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

Posted by kritter19 @kritter19, 21 hours ago

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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Sue, Volunteer Mentor | @sueinmn | 19 hours ago

@kritter19
Can you tell us when and how the diagnosis was made?
Here is a link yo the Mayo Clinic information about Syringomyelia:
https://www.mayoclinic.org/diseases-conditions/syringomyelia/diagnosis-treatment/drc-20354775
Here is a link to contact Mayo Clinics to schedule an appointment:
http://mayocl.in/1mtmR63

kritter19 | @kritter19 | 10 hours ago

In reply to @sueinmn "@kritter19 Can you tell us when and how the diagnosis was made? Here is a link..." + (show)

2021 on mri. The neurosurgeon dismissed it and neck pain has gotten worse, headaches, Nausea, so much more. It's really long, pain management doctor thinks it could be reason for symptoms getting worse?

dmk | @dmk | 9 hours ago

I have 33 year old child diagnosed with syrinx at age 16 with many symptoms there is a group asap.org with lots of info and drs as well as they have yearly conferences with physicians in all modalities related to Chiari and or syringomyelia. You get to meet others in same boat. Experts are pediatric neurosurgeons even for adults. For my child it’s pain management which allows them to have a life. Best of luck