@jenniferhunter who are the doctors at mayo that have knowledge of this condition? I am looking to find someone at Mayo's rather than my hometown where it is not well known.

Hello Jennifer
Thanks for your response
Sorry for my late response I ‘be grown up with half my C1 missing ( the arc) on the ataxia, limited neck movement grown up with disc deg, spinal stenosis , nerve root compression all cervical C5/C6 C7and then I have gone into spinal cord compression unfortunately spinal surgeon missed this prehaps didn’t look at mri scan properly 2018 . He referred me to neuro thinking brain issue , I failed more tests etc again missed neuro did 2019 mri and said nothing significant
Had to get second opinion saw 2nd neuro failed more tests I’m told muscle neck spasm I’m saying it’s my neck previous possible C5 childhood fracture then asked to see another spinal surgeon, I saw neurosurgeon 2024 who re looked at 2019 mri and there was spinal cord signal , spinal fluid leak &cervical Myelopathy. Neurosurgeon did more scans mri and ct and myelopathy had improved but have melomalicia.

I’m seeing neurosurgeon in a few weeks he said he thinks I have had previous cervical melophay on his letter also that my ataxia is caused by melomalicia and if I’m concerned about loss of function arms and legs we will discuss and look at the merits of surgery at next meeting as at present not clear.
So I think I’m already knackered .
No never had previous surgery I should have though