I have a syrinx and can't find a doctor that knows much about it?
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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Thanks so much, i really appreciate it:)
ASAP.org
Did u go to this doctor? How do u fix the instability?
I really appreciate u sharing this information. God blesd
You normally see this with Chiari 1 malformation. Has anyone ever mentioned that
No. I've seen it in doing my own research.....mri shows syrinx at t7 & t8 with 5cm craniocaudal?? With scoliosis, which is didn't have growing up. I'm 41 now and the syrinx showed up on mri 2021, 2023, 2025
https://findexpertmd.com/d/Syringomyelia?physician=physician
It is a shame the many times I read, see, and hear of patients "figuring out" things on their own either through research, self-referrals, blog sites such as this. I find that most physicians would prefer the quick and easy cases.....what a shame after all their long hours, nights of training. Not many are willing or have the resources, in some cases to do their own investigative medicine. Probably not their original thoughts on becoming a healthcare provider but since medical/patient care is now being run as a business model that's what happens and the patient/patient care is suffering for it. Large research centers are our best bet as that's what is being evaluated....the patient and clinical presentation
I was diagnosed with a syrnix about 9 years ago. Pain management wanted another MRI to check on it, because they thought it was causing me issues. Miraculously the next MRI did not show one!
Not sure if that is common or not.
Best of luck on your journey.
Totally agree....im so tired of the 10 min appointments and out the door u go. Or they send u to another dept. Yesterday I showed my primary care doctor the written mri about the syrinx and he said I don't know but I can send u to a neurologist?
Wow. Was it thoracic or cervical? The syrinx?