Myelomalacia: Let's connect

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.

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.

I'm interested in stem cell treatment for myelomalacia. Is the any more information on this? Who could I contact?

@mizen There is research going on at Mayo for spinal cord injury using stem cells, but that is not the same as myelomylacia. When an MRI shows white mottled areas within the spinal cord described as myelomylacia, it is showing areas where nerve cells have died and dissolved and are no longer present.

<p>Is there any cure for myelomalacia?</p>

@rasmus07 Hello and welcome to Connect. I saw the notes in your profile that you sustained a neck spine fracture and spinal cord injury causing myelomalecia and severe spinal cord damage.

I personally have known 2 people with similar spine injuries caused by spine fractures. This is a difficult injury to live with and the disability it creates. I am a Mayo spine surgery patient, and I want you to know about a spine surgeon at Mayo who is researching spinal cord injuries and has had some success with stem cells. Not every patient in his study has improved, but one guy who had a surfing accident spinal cord injury has improved a lot.

Here is some information about this surgeon, Dr. Mohamad Bydon.
https://www.mayoclinic.org/biographies/bydon-mohamad-m-d/bio-20147826
https://newsnetwork.mayoclinic.org/discussion/new-hope-for-regaining-his-old-life-after-being-paralyzed/
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/stem-cell-treatment-after-spinal-cord-injury-the-next-steps/mac-20488605
Research Clinical trial of stem cell therapy for traumatic spinal cord injury
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/clinical-trial-of-stem-cell-therapy-for-traumatic-spinal-cord-injury/mac-20429602
I don't know Dr. Bydon personally, but I do know he is an excellent surgeon and highly respected. At the time I was looking for a surgeon for my spinal stenosis and approaching Mayo, I was considering 2 surgeons and Dr, Bydon was one of them. I chose the other one because he had a medical paper that described my unusual symptoms that many surgeons had misdiagnosed before I came to Mayo.

Jennifer

I'd like to add my welcome, @rasmus07. I moved your discussion about myelomalacia to the Spine Health support group to this existing discussion:

- Myelomalacia: Let's connect https://connect.mayoclinic.org/discussion/chronic-myelomalacia/

I did this so that you can connect with other members like @lanieg @robinsitzmann @dhansen78 @hodinator @jpko2023 @dksnyder @mizen as well as @jenniferhunter. Simply click the link to read the messages so far.

Rasmus, this seems like a recent injury for you. How are you managing and adapting to the wheelchair? So many changes.

I’m just going to die in peace but thank you

Ye

Peace is the important word here. Acceptance is hard. What gives you joy in life?