Posted 5/30/2015 8:09 AM (GMT -7)
i was diagnosed w/ Spina Bifida Occulta at age 20, after seeing many docs and having major bowel and bladder problems. My problem is at S1, not far from yours!
I ended up needed spinal cord surgery due to a tethered cord and then had a spinal fluid leak. Have had pain ever since then (16 years ago) but it prevented further damage, they especially to nerves in my legs.
Any way you can see a neurosurgeon about this?? They would be the ones to really assess what's going on and determine a plan of treatment.
If you want to "talk" more about this, please email me. Been thru a lot due to the SBO, and I understand the terror it can cause, both mentally and physically.
As for your mom, could you find some info on SBO and show her that it's not just about muscle spasms, but so much more, and needs to be treated as such? Sometimes when my mom is in denial about some of this stuff, it helps to find good reliable info, and show it to her, not accusing her of not understanding or at all in a negative way, just more of a "hey, i found this info about my problem and i thought you might like to read it". Works with my mom, but takes time. Hope that helps.
Things will get better. I know 18 is a long way away right now, but if necessary, you can always get your own treatment/handle your own care the second you turn 18.
Hold on Kylie…it will get sorted out. Write me if you want/need to. I am here.