Myelomalacia: Let's connect

Yes. Was in Er for muscle spasms ans I have myeomalacia at c5 and stenosis. I wondering if there's a surgeon at mayoclinic who knows what to do. I was already fused c3 to c7 but still have a mild stenosis at 7 more so at 5 and c7 t1 show protrusion. My spurs are still there after a surgery just in Aug. 2022. I've never seen an updated Mri reading almost the same in 2024 for a fusion I just had. I'm crooked now scoliosis. Vertigo and nueropathy. I feel your pain. It seems nobody in my city wants to touch me. That's why I need to find some surgeon who knows hiw to fix me.

I was diagnosed with this prior to surgery. The work severe was used several times in the radiology report on my initial MRI. had ACDF of C5-7 in Feb after 2 consults. Don't know what a new MRI will show, but surgery was done to stop the progression of the possible outcomes. I am in PT for the dizziness, clumsiness and dealing with the pain a numbness. Meds seem to be working on the nerve blocking and keeping the pain and all at bay most days. Still able to work full time, but some days are better than others. I wish you the best possible outcome!

I have the same story, experiencing the same symptoms along with muscle stiffness, spasms, internal tremors and mild fasciculations after exertion. My right arm becomes very weak if I use it too much. Neuromuscular doctor says it is from malacia at c-4. Neurosurgeon disagrees, says there are no changes in the MRI since the symptoms have developed. I have never been told about the malacia until my recent MRI April this year. Please post after seeing surgeon I am stuck between physicians opinions with no help.

@dacraig Welcome to Connect. I am presuming that at this stage, you have not had surgery, but may be considering it. When a radiologist issues a report on imaging, they often will list a lot of possible diagnoses that need to be confirmed by a clinical exam. Surgeons can have a differing opinion. Did your surgeon show you the imaging and explain it to you?

Myelomalacia can show up as a white mottled fuzzy looking area within the spinal cord where there is compression and typically represents the loss of nerves that have died. In your case, you need to get the diagnosis from your specialist's opinion. Myelopathy represents spinal cord dysfunction, but not necessarily permanent damage. Surgeons may also be watching for changes over time before offering surgery. At some point, you need to decide if you want surgery. An onion from another surgeon may be different, and you may get an offer for surgery sooner. Generally speaking, it's best to decompress before permanent damage occurs, but even surgeons can't tell you exactly when that happens on your timeline of your spine condition. If you already have permanent damage, they may hesitate since they can't improve that function.

I am a cervical spine surgery patient, and my surgery was done before any permanent damage happened. I had good results and spine surgery resolved all the spine generated pain. Sometimes surgeons may decline to help if they don't think you will improve, for example, if there already is some permanent damage that will leave lasting symptoms, weakness or another condition that can produce overlapping pain symptoms, and they may think a patient will blame that result on them. They should tell you that surgery will help prevent a spine condition from worsening, and not necessarily promise improvement or pain reduction as a result. There are a lot of variables, and all patients are different.

This link has some images of Myelomalacia showing the white mottling or streaked areas.
https://radiopaedia.org/cases/compressive-myelomalacia-snake-eyes-appearance?lang=us
Do you have an appointment for follow up? You might ask questions on your hospital portal. Are you considering a second opinion elsewhere?

I had a 3 level fusion C-3 thru C-5 in 2005. I had an injury to the neck from a fall from horse. The surgery solved all my problems. My recent symptoms started app 1 1/2 years ago.
The neurosurgeon who did the surgery is retired, but a neurosurgeon now from the same department is pretty adamant that the MRI has not changed enough ( there are obviously degenerative changes) that explains the symptoms I am having now. Neurologists disagree. The MRI that was done 4/2024 shows malacia at c -4. I have never had that in the MRI reports in the past.

I have had several opinions from different neurologists and a neuromuscular specialist.

@dacraig The malacia is where your fused levels are. Do you think it is an old injury that was caused by the fall? Do you have old MRI images to compare to back 19 years to see if it was present? Is there any compression happening at the end of the fused levels now? Are you considering a different surgical opinion at another facility? Often, doctors at the same place don't want to counter an opinion of their colleague. Perhaps your neurologists could make a recommendation to another surgeon.

I don’t have the results to the original MRI any longer, I do have some slight compression where the degenerative changes are now. The surgeon doesn’t feel like it is enough to explain my symptoms. I have not seen another surgeon, I am reluctant because I have a lot of old hardware that would have to be removed and it would all be risky , could make things worse he said.

Hello everyone
I have just joined and my sympathies to all of you whom are struggling with various health issues of spine.
Before I joined I was reading posts regarding Myelomalacia and mine is in cervical

I couldn’t understand why I am losing more function and my legs are the worst, I’m manually pumping them up with weights just to be able to feel my legs and have some power/ strength but it doesn’t last very long.

I have lower back issues but after reading some of your symptoms I relate to each one. I’ve lost position sense, if I look behind I loose balance so I’ve learned to turn my whole body. I’ve lost some temp sense, and I can’t get around in dark , if I shut my eyes / rhomberg test I fall backwards
I find it difficult and time consuming managing multiple conditions and orthostatic hypotension etc
But it was really comforting to read others comments and similar symptoms relating to Myelomalacia as many Drs etc aren’t familiar with this condition

@sarahmargaret Welcome to Connect. I'm glad you are finding it useful for understanding your own conditions. That is what is so good about it because we all learn from each other. Have you had treatment to help your spine condition? Do you have a specialist advising your care?