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Myelomalacia: Let's connect

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

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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?

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Replies to "Jpko2023, some of this resonates with me. I had an MRI and read my report which..."

I have always read the reports because I couldn't believe nothing had worsened. I had never seen Modec changes or myelomalacia on previous reports until now. Even now, my pain doctor brushed it off saying, "of course you have myelomalacia, you have always had it since initial surgery". Then I asked why it was never stated in the past 10 years especially when I kept going to doctors asking why I am falling, losing the use of my hands, feeling like early onset Alzheimer, can't walk, bladder/bowel problems, numbness/ loss of sensation from waist down and chest/shoulders, pain, extreme fatigue, etc., etc! A long list of strange symptoms. All of my doctors said it was from arthritis in the spine, old age, obesity, depression, etc. All the while, my body was declining.
I am not sure why Mayo wouldn't see or review my file. They just mailed me a letter stating that they cannot provide me with any procedures or treatment. There is nothing further they can do or offer. Frustrating.
Good luck to you and thank you for your post.