Myelomalacia: Let's connect

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?

@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/

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.

@dorob I think the doctors want to investigate and rule out other causes, and perhaps that makes them feel like they are doing something other than saying they can't help. Sometimes time will reveal things. MFR can help a lot of issues, and is beneficial even if it does not directly address nerve damage. It's just hard to determine if nerve damage is there permanently or just impairment. Physical therapy is usually a good thing to do.

I have myelomalacia the tremors & pain are so severe recently I had to go to the ER , I was put on IVs for pain . Tremors are so bad at times I have a family member that accused me of being on meth!! Anyone else have severe nerve muscle spasms?

in 2018 had leg weakness so had ACDF surgery 3 discs C5-T1
diagnosed with myelomalacia (like a "dent" in the spine)
doc said i would get better but never 100%
i did get better could walk with out assistance and golf (not like i used to). then 12 months later legs got weak. got various treatments including stem cells. did not help. at 20 months post surgery was walking with a cane due to leg weakness. saw two neurologists that ruled out any other cause. they were surprised i was getting worse. then the pain started. it was a couple hours a day most days. now 3 years later i feel like ability to walk is worse. and pain several hour most days. OTC pain pills don't help much and docs didn't give me anything better.
life is really hard right now. walk with a cane short distances. i exercise 40 minutes total per day treadmill and rower. i never improve.
sent file to mayo clinic last year they declined to see me.
going to see a pain doctor but i am skepitcal.
i can't do anything around the house, wife and kids do everything that i used to do
fighting hard to not get depressed

in 2018 had leg weakness so had ACDF surgery 3 discs C5-T1
diagnosed with myelomalacia (like a "dent" in the spine)
doc said i would get better but never 100%
i did get better could walk with out assistance and golf (not like i used to). then 12 months later legs got weak. got various treatments including stem cells. did not help. at 20 months post surgery was walking with a cane due to leg weakness. saw two neurologists that ruled out any other cause. they were surprised i was getting worse. then the pain started. it was a couple hours a day most days. now 3 years later i feel like ability to walk is worse. and pain several hour most days. OTC pain pills don't help much and docs didn't give me anything better.
life is really hard right now. walk with a cane short distances. i exercise 40 minutes total per day treadmill and rower. i never improve.
sent file to mayo clinic last year they declined to see me.
going to see a pain doctor but i am skepitcal.
i can't do anything around the house, wife and kids do everything that i used to do
fighting hard to not get depressed

This sounds really unusual to me because I've had the same vertebrae in my neck fused, only not all at once. I had my first fusion procedure at the C5-C6 level, and then about a year and a half later I had a second procedure at the C7-T1 level. The surgeries were performed at 2 different hospitals by 2 different neurosurgeons, and the only complications have been not being able to turn or raise and lower my head like I used to.
If it hasn't happened yet, I'd request an new MRI of your upper spine and neck, something doesn't sound right to me.