Hi, it's Elke again. I know I'm not super active in this group, but I have been very active in the original CCI FB group Jen started June 2019 trying to figure out "all of this" since it's clear it's not just CCI/AAI.
"Dimplegate" was my first baby- which revealed what seems a startling percentage of MECFS patients who have divots/dimples- roughly 50% (that goes along with the poll @Hip posted here in PR.
Some new information seems to be coming out as well with regard to tethered cord- that being evidence of a taut/tethered filum on PRONE (belly down) lumbar imaging.
So now, prone MRI is my second baby.
In the original FB group- 12 of us have gotten prone lumbar imaging, based on the following study:
https://pubmed.ncbi.nlm.nih.gov/23140126
I created a protocol for other patients and MRI techs/radiologists, and we have more members scheduled for prone MRI.
Of these 12 patients (myself included) 8 of us have evidence of this "tight/tethered filum". This, too, seems to be an overrepresentation as well.
The following image is mine from my prone MRI and you can see that it aligns with the above linked publication. Belly down, gravity should cause ALL of those black dots to settle downward, yet there is a rogue black dot that stays posterior- subsequent slices shows it migrates further upward and connects to the column wall.
This "feels" like it means something- but what, exactly, I'm not sure. Most TC/OTC symptoms are reserved for the lower extremities although neck pain, chiari 0, and blocked CSF flow are included as well as some vague mentions of cognitive issues. But HOW....
Dr Klinge has done some research on the filums and has found cellular abnormalities- mast cells, inflammatory cells, even CSF producing cells, but curious what else could link tethered filums to MECFS symptoms...
Hoping to spark some theories and discussion to hep tease out if this is anything or not...
"Dimplegate" was my first baby- which revealed what seems a startling percentage of MECFS patients who have divots/dimples- roughly 50% (that goes along with the poll @Hip posted here in PR.
Some new information seems to be coming out as well with regard to tethered cord- that being evidence of a taut/tethered filum on PRONE (belly down) lumbar imaging.
So now, prone MRI is my second baby.
In the original FB group- 12 of us have gotten prone lumbar imaging, based on the following study:
https://pubmed.ncbi.nlm.nih.gov/23140126
I created a protocol for other patients and MRI techs/radiologists, and we have more members scheduled for prone MRI.
Of these 12 patients (myself included) 8 of us have evidence of this "tight/tethered filum". This, too, seems to be an overrepresentation as well.
The following image is mine from my prone MRI and you can see that it aligns with the above linked publication. Belly down, gravity should cause ALL of those black dots to settle downward, yet there is a rogue black dot that stays posterior- subsequent slices shows it migrates further upward and connects to the column wall.
This "feels" like it means something- but what, exactly, I'm not sure. Most TC/OTC symptoms are reserved for the lower extremities although neck pain, chiari 0, and blocked CSF flow are included as well as some vague mentions of cognitive issues. But HOW....
Dr Klinge has done some research on the filums and has found cellular abnormalities- mast cells, inflammatory cells, even CSF producing cells, but curious what else could link tethered filums to MECFS symptoms...
Hoping to spark some theories and discussion to hep tease out if this is anything or not...