Thread by @Gronnet

When I got #LongCovid, it felt like I began to fall apart. But that was not only figuratively, I really was, literally.
Now I know the status of my neck- and spine. And it’s very seriously damaged…1/
#EDS #MEspine #MECFS #hypermobility

Following imaging & evaluation at @Clinica_Teknon I have been diagnosed with -

1) CCI (Cranio-Cervical Instability) and Cranial Settling.
This means that my skull, C0, is sinking down, pressing on my spine and compressing my brainstem.

2) AAD & AAI (Atlanto-Axial Dislocation and Subluxation).
This means that my C1 & C2 vertebrae are misaligned and dislocated to the left.

3) Further subaxial instability of vertebrae C4 & C5, right herniation-protusion of disc C5 and C6.

4) OTC (Occult Tethered Cord) visible on Lumbar Prone-Supine MRI.
This means that the spinal cord is tethered by the filum terminale, with serious neurological consequenses -

me-pedia.org/wiki/Tethered_…

5) Due to an abnormal curvature of my lower spine, I have a L5-S1 discopathy, meaning a degeneration of a intervervetebral disc, putting further pressure on the lumbar spinal cord.

6) Abnormal jugular veins, meaning bilateral internal jugular vein compression and abnormal loops running close to C5 & C6

These findings explain my serious and progressive neurological symptoms and severe pain.

The option is to undergo a full cervical fusion C0-C7, a high-risk surgery that would leave me with a 0% mobility of my neck, meaning I could never turn my head again, not even a milimeter.

And, a Tethered Cord Release surgery.

However, due to the rare complicating factors in my case, including the loops on my jugular veins, the cervical fusion surgery becomes too risky, hence is likely ruled out.

Why has this happened to me? No one knows.
It may be an unfortunate combination of genetic/congenital factors and infectious triggers causing faulty connective tissue and collagen formation, impacting the ligaments supporting the neck- and spine.

The connection between #MECFS #ehlersdanlossyndrome and related conditions, and these spinal problems (CCI, AAI, OTC) is becoming increasingly evident, as in this study for example;

ncbi.nlm.nih.gov/pmc/articles/P…

@BjornBragee

Still, the spinal issues are underdiagnosed in the #LongCovid #MECFS #EDS patient populations, and are generally overlooked by the medical- and research communities involved in these conditions.

I firmly believe that the prevalence of these types of serious structural issues must receive much greater attention, and that neurologists/neurosurgeons must be involved in the translational research efforts now underway to solve the questions of post viral illness & #LongCovid