Myelomalacia: Let's connect

Hello Jennifer thanks for your kind words.
I think it so caring and kind of you to give support with others on this site.
Especially with what you have been through.

I’m getting slightly disheartened I read on this site that in others experience the neurosurgeons / surgeons don’t mention or discuss the word Myelomalacia, I have just had my first experience of this.
Although I should have been more assertive and asked.

I saw the mri scan after my servere compression / spinal fluid leak had de compressed on its own over a period 3-4 years . I could see what looked like white smoke on the scan area C3, C4, C5,C6 it was about 2.5 inches .
I’m still in myelopathy but not servere
No mention of the Myelomalacia it’s as if it is a bit of a taboo. But it is deadly and serious. I have to have repeat scans and if progression he operates.

I only spent around 10 mins at appointment 15 max .

In my brain I’m thinking if my spinal cord is knackered what’s the point of waiting for me to get worse myelopathy and then operating when my cord is already damaged .
Surgeon did say if you had seen me 2018 I would have operated then.
It was another surgeon I saw at same hospital.
I need to write a list of questions to ask.
By the time I had shared any worsening of symptoms time seemed to be up.

This is an mri scan of neck where myelopathy was present with spinal cord signal . It got worse after this as missed then it has released itself
I had grown up with spinal stenious etc

From what I’ve researched ( I maybe wrong please tell me if I am ) myelomalacia can be reversed if decompression is under taken quickly .

If decompression isn’t undertaken within the “ time is spine “ then it’s permanent as the smoke / white is the death of neurons

But I’ve also read that it can apparently appear years later after an old injury .

Any insight would be appreciated

@sarahmargaret I don't have the expertise to say if your image shows myelomalacia or myelopathy. You are correct in that myelomalacia appears as whitish areas within the spinal cord and it does represent death of those nerve cells because the imaging is showing just space there. It is hard to answer the question of exactly when do nerve cells die from compression?

I did find this link which has an image of myelomalacia in the spinal cord.

ISSN 2768-5152
©2023, American Society of Interventional Pain Physicians©
Volume 7, Number 3, pp. 105-107

Cervical Myelomalacia Diagnosed via Magnetic Resonance imaging in a Patient
With a Spinal Cord Stimulator for Complex Regional Pain Syndrome: a Case report
https://painmedicine-casereports.com/current/pdf?article=NjQ0&journal=44
I agree with you that there is no point in waiting for further damage when you have a chance to intervene and prevent further damage from happening. I think you need another opinion in a place unrelated to where you have been seen. Try another medical center or a large university medical department. A surgeon probably won't promise that you will regain any lost functions, but they would try to keep it from getting worse. I don't think this surgeon is interested if he states you should have had surgery in 2018, and he now ignores that recommendation.

I do see the whitish areas in your image. but it is not very clear, and sometimes there can be artifacts in imaging. It doesn't look horrible to me, but I don't have medical training. Was this a current MRI? If not, a new one would be best, and a new surgeon may authorize it for you. I do see a disc pressing into the spinal cord and that should be enough to warrant a new appointment for potential surgery with the right surgeon. Don't worry if your records don't say myelomalecia, that would be a good thing and you won't have that diagnosis following you around. Don't let a specialist keep wasting your time if they don't want to tell you that they will not help. Don't identify yourself as a diagnosis to try to fit in with a doctor. You are just a patient with symptoms and imaging that shows a problem. It is there job to figure out what is happening and if and how they can help you. Sometimes things are misstated in medical records anyway, or it lists possible diagnoses that need further evaluation or will be evident in time as it progresses.

Hello Jennifer
Thanks for your response I gratefully appreciate it. I had a mri 2018 after I knew neck was worsening saw spinal surgeon he referee me to neuro
This mri scan was 2019 but they missed it they gave me a wrong diagnosis and wrote and said nothing significant on 2019 scan just slight disc degeneration disease.
( I was getting confused as grown up with spinal stenosis)

Then I had to get second opinion and see a neurologist then I requested being referred back to spinal surgeon
Saw spinal surgeon 2024 he looked at above image confirmed spinal fluid leak, spinal cord signal and compression and I had ataxia .

He re did scans in 2024 and confirmed compression had improved but I had myelomacia ( softening of cord)
Now I have mild myelopathy and they seem to be waiting for it to get worse and then operate . Surgeon confirmed the myelomalacia is causing ataxia but says I still have myelopathy

On my new scan taken 2024 I saw the melomalicia but cord isn’t compressed like 2019 scan.

The image mri is 2019 compression they missed

They re did mri 2024 the compression had lessened but stated I had evidence of myelomalacia ( cord softening) they think from a previous myelopathy

Ps thanks for the links