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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
Replies to "Hello Jennifer Thanks for your response Sorry for my late response I ‘be grown up with..."
@sarahmargaret Your story is important and helps others know how important it is to advocate for yourself. It's also important to understand that a lot of spine surgeons don't want to take difficult cases or those with greater risk. Upper levels of the cervical spine at C3 and above are riskier because the nerves for life support that service the heart and lungs originate in that area. They can make up a lot of excuses to avoid saying there is a problem that they can fix. All surgeons are not like that, but I've also had my share of surgeons who refused to help me, and my surgery was a simple fix, but it confused several. I did have my surgery at Mayo that resolved the problem. Your surgeon is trying to document everything so it is clear what your present condition is.
I'm sorry you have had loss of function. There is probably no way to know if surgery can help regain any function. You are right in that things could be worse. I hope you'll share your experience as you go forward with treatment. Good luck with your rehab when you get to that stage.
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The loss of function I have never been able to carry a tray, pick things up with fingers etc and had a wierd sensation when walking or when using hands. I now know it was perhaps the melomalicia . I’ve been fighting it with weights etc so I have power but it’s a daily battle , however there are people out there with this condition in wheelchairs and immense pain.