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Myelomalacia: Let's connect

Spine Health | Last Active: Feb 21 9:26am | Replies (50)

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@jpko2023

I had my first ACDF in 2010, laminectomy in 2010, and 2nd ACDF in 2013. I was never pain free or normal since then. However, I was never told about myelomalacia. My condition was declining and within the past 4 yrs, my quality of life is now very low. I have been reporting my unusual and new symptoms continually during this time. Multiple MRIS, EMGS, neurologist, neurosurgeon, orthos, pain clinic...nobody told me about this. Even sent me to a urologist without even considering a spine issue. I KNEW all of these problems were from my neck and I was just dismissed, told to lose weight and live with it. The most recent MRI from June shows chronic myelomalacia. ALL of the symptoms that I have been begging for help with. Now, my condition is so bad that I can't function on my own. I read if treated early, it can be managed and possibly slow down progression. I am livid and frightened. Tried to be seen at Mayo but they wouldn't take me or even look at my reports/scans. Where do I go now? Is this malpractice on doctors or radiologists for a decade??? I am only 54 and living like a 94 yr old.

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Replies to "I had my first ACDF in 2010, laminectomy in 2010, and 2nd ACDF in 2013. I..."

Jpko2023, some of this resonates with me. I had an MRI and read my report which mentioned the Myelomalacia more than once. Neither my PCP, nor my Neurologist caught it.....I looked it up and contacted my PCP about it, which then caused a new MRI etc. I would always suggest that each patient advocate for themselves by reading the results and questioning anything you don't understand. My question to you is, did you ask why Mayo would not take you or look at your scans?