Myelopathy and myelomacia

[phoenixrises]

Does anyone in this community have both? On my most recent MRI, it reads possible underlying cord edema/Myelomacia. The MRI also detected diffuse bone marrow high intensity cord signal. I'm scared and have noone to talk to. Thankfull to have found this online support group. Waiting to have 1rst appt. with neurosurgeon.

[Hidden]

Hi Phoenix

Many of us on Myelopathy Support on Facebook (come join us if you haven't already) have both myelopathy & myelomalacia, which we call "the white spot of doom" - sounds scary, which it can be, but we like to lighten the mood a little - it is a form of coping for us.

Myelomalacia is basically a signal change in the spinal cord seen on the mri that, like a bruise, if you will, that demonstrates that there has been spinal cord damage, which often is not reversible.

That said, you can still have myelopathy, even though there is no myelomalacia present. MRI scans are only one piece of evidence in the jigsaw puzzle when figuring out if someone has myelopathy or not. The results of the MRI should always be compared to the clinical signs & symptoms that someone has presented to the doctor with, alongside any neurophysiological testing such as nerve conductions studies or electromyography testing (EMG).

However, as if often the case with our members, myelomalacic signal changes are often present because they have suffered spinal cord compression for far too long, whether due to missed or misdiagnosis. If you have myelomalacia changes on mri, then you will almost definitely will have symptoms of myelopathy.

The diffuse bone marrow high intensity signal is not usually a feature of myelopathy & may be nothing or something else entirely. HOpefully the blood work that your doctors will perform as part of your assessment will help put your mind at ease on that one.

I wish you good luck going forward. It is scary but you are not alone - you have us. Hugs

Kind regards

Shirley

[crwriter]

I am suspected to have myelomalacia. I suspect I experienced a bleed due to heparin injections. I've had a headache since that happened and that was over 1 year ago.