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Myelomalacia: Let's connect

Posted by lanieg @lanieg, Feb 23, 2023

I recently had a MRI of my cervical spine and moderate to severe myelomalacia was discovered. I already have a C3 to C5 fusion. Symptoms include pain in arms, neck and shoulders, off balance, light headed, difficulty picking up small items. Has anyone else experienced this diagnosis? What has been done about it? Seeing a neurosurgeon soon but not excited about another neck surgery. However what I read about it says if left untreated could cause serious nerve issues. Any help would be greatly appreciated.

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | 2 days ago
In reply to @dorob "Is Mayo Clinic doing stem cell therapy for myelomalacia? I am 72. Have had two cervical..." + (show)
@dorob

Is Mayo Clinic doing stem cell therapy for myelomalacia? I am 72. Have had two cervical neck surgeries in 2008 and 2018. In 2021 had grade 4 concussion. Then had knee replacement in which quad tendon or ligament ‘popped’ immediately after surgery. As a result have struggled with numerous falls becuz quad does not engage. I had myelomalacia diagnosed at first surgery, seen again at second at Mayo and mris, ctscans after numerous falls shows ‘progression’ at C6-7. I’m having symptoms - numbness, burning both arms, 4th and 5th digits, lateral sides of feet. Not sure my age can handle another cervical surgery tho I am otherwise healthy and active. Will stem cell to the degeneration in C6-7 slow the progression of the myelomalacia?

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@dorob Welcome to Connect. I'm glad you have been seen at Mayo. Are you currently a patient there? It may be best to ask your questions of your specialists. I understand why you would ask. Have you tried physical therapy?

My physical therapist also does Myofascial Release which helps release tight tissue and scar tissue. It can also release surgical scar tissue that gets tight. My understanding of myelomalacia is that it represents a loss of the nerve cells and is permanent. There is stem cell research for spinal cord trauma going on at Mayo in a Regenerative medicine department with Dr. Bydon. I believe this is research for recent trauma. Myelopathy is spinal cord dysfunction that may be able to recover if a decompression surgery removes the compression.

Numbness in the 4th and 5th digits may also be a symptom of thoracic outlet syndrome, which I have. That causes overlapping symptoms with spine generated symptoms, and it may be more common in spine patients when there was an injury like a whiplash or a repetitive stress injury.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is a provider search at https://mfrtherapists.com/

REPLY
1 reply
dorob | @dorob | 1 hour ago
In reply to @jenniferhunter "@dorob Welcome to Connect. I'm glad you have been seen at Mayo. Are you currently a..." + (show)
@jenniferhunter

@dorob Welcome to Connect. I'm glad you have been seen at Mayo. Are you currently a patient there? It may be best to ask your questions of your specialists. I understand why you would ask. Have you tried physical therapy?

My physical therapist also does Myofascial Release which helps release tight tissue and scar tissue. It can also release surgical scar tissue that gets tight. My understanding of myelomalacia is that it represents a loss of the nerve cells and is permanent. There is stem cell research for spinal cord trauma going on at Mayo in a Regenerative medicine department with Dr. Bydon. I believe this is research for recent trauma. Myelopathy is spinal cord dysfunction that may be able to recover if a decompression surgery removes the compression.

Numbness in the 4th and 5th digits may also be a symptom of thoracic outlet syndrome, which I have. That causes overlapping symptoms with spine generated symptoms, and it may be more common in spine patients when there was an injury like a whiplash or a repetitive stress injury.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is a provider search at https://mfrtherapists.com/

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Thank you so much for your interest and input, Jennifer.
I am not currently being seen by Mayo living in Michigan. I have been involved with a MFR therapist now for a couple of years and there are times in which the therapy will relieve some of the pain and tingling but not always (though it’s very relaxing!)

After having seen a neurologist who suggested an EMG to make sure we were not dealing with ulnar or carpal tunnel (both seemingly ruled out), I next visited a physiatrist a couple of days ago. He had all studies done in the past several years for comparison. He is suggesting PT, a couple of dietary supplements and CT bracing at nite to rule out those same causes. I felt he was very thorough in his exam. But as a nurse married to a physician and as someone who has worked in the exercise world for years (I’m sure that wear-and-tear didn’t help), I am finding like many others in this forum that what I am feeling on the ‘inside’ does not translate always to what doctors are testing for thru exam on the outside especially if one is on the cusp of having severe symptomology present or tetering on what is difficult to discern.

At my age and after already having had two previous cervical surgeries, I am not going to be a fan of anything other than conservative modalities.

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