Anorectal Malformation (AMR) and Tethered Spinal Cord

[MelodyW]

Just wanted to make a post about the connections between anorectal birth defects and tethered spinal cord for anyone who it may help.

There's a study titled "The tethered spinal cord in patients with anorectal malformations" published by the Journal of Pediatric Surgery Vol. 32 Iss. 3 Mar. 1997 pp. 462-468 written by Marc A Levitt and Alberto Pena.

"This study suggests that tethered cord occurs more frequently in patients with severe anorectal defects, sacral hypodevelopment, myelodysplasia, presacral mass, sacral hemivertebrae, or a single kidney, or in those with an anorectal defect with poor functional prognosis."

I'm not able to find the other article but another article I read about anorectal/ anal birth defects stated that with those types of birth defects, the development of bones in the hips and pelvis could also be affected.

For anyone who suspects or has been diagnosed with tethered cord, you may wish to look into undiagnosed anorectal malformations, too. I'm pretty sure it can sometimes look normal externally but internally there are deformities.

I am bedridden now and have not been able to get these diagnoses but I believe this or something along these lines is what I'm dealing with. None of any of these issues have shown on any of my MRIs, unfortunately. My pelvis also formed into what I can only describe as an optical illusion where, when seen straight on, it is interpreted by most as "normal." This could not be further from the truth.

At the risk of sharing too much, when I have a bowel movement or pass gass, it feels like the area where my anus is is much much smaller than it should be and internally deformed or something. It also feels like the area where my pelvis should be is so small that it never fully formed. This then affects my stomach and spine and my SI joints, hips, spine, and pelvic bones all feel so twisted it's like they are corkscrews. I actually noticed that my pelvis looked odd from a young age.

I'm also a twin who was born to older parents. I have read that incidences of tethered cord are higher in twins.
I hope this information can possibly help someone else with similar issues.

[stephanies]

Hi Melody,

Pain in the distribution of the pudendal nerve can be from tethered spinal cord. I had my first lumbar MRI a few years ago and found out that the termination of my spinal cord is a little low (midway between L2 and L3), which can indicate a tether. As far as I know, I don’t have the anorectal malformations you mention. It is so difficult to sort through all the possible causes of PN and determine a course of action, especially when the spine could be involved. I hope you are able to figure out a path forward.

Stephanies