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lanieg (@lanieg)

Myelomalacia: Let's connect

Spine Health | Last Active: 3 days ago | Replies (50)

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@jpko2023

Hello,
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.

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Replies to "Hello, I have always read the reports because I couldn't believe nothing had worsened. I had..."

So sorry to hear that you are going through this. I have a similar history. Had an ACDF in 2014 for a cord compression in c3/4 and c4/5. By the time I was diagnosed, I had been having symptoms for a few years. Went to 4 doctors before they figured it out. By then, I had irreversible damage. I did get immediate reversal from the bladder/bowel symptoms. The rest of my symptoms were only minimally improved. I still have numbness in my hands and feet, chronic fatigue, difficulty walking, disequilibrium, imbalance, problems with proprioception, and muscle weakness in all parts of my body (worst is in my legs). My initial MRI's showed several areas of myelomalacia. These problems had remained pretty stable until the last year. One of the biggest declines is in my balance. If I'm upright, I feel like I'm drunk. My body wants to sway and I feel very dizzy or off balanced. My most recent MRI showed slight changes to the myelomalacia so I'm wondering if this is the reason for my decline. My neurologist didn't seem to know. I was given an order for PT to improve my balance and dizziness and am currently doing that, although I haven't noticed any improvement yet. They are focusing on strengthening the muscles in my neck and a few vestibular exercises. I guess my main question is: if my balance and dizziness is due to the cord damage, is there anything that can help? I share your frustration with not knowing where to turn for help.