Hi...ur thoughts r very well on target...I have both EDS and TCS....and have had issues with not being able to void...I have to concentrate...no one can be talking to me or I can not be doing nething else like brushing my hair...lol...u know when running late...neway I have to focus to go...
Does she also have bowel issues?
As for her ankles....watch when she sits...look at the position of her feet, do they tend to lay on the sides instead of resting on the bottom of her soles....I even stood on the sides of me foot/ankle...it felt natural to me, I never thought nething of it until my MIL said something...it took me a few yrs to break the habit....I could no longer stand like that now....but someone as young as her could and it would be a neon sign flashing EDS.
The thing with TC release at ne age it can re-tether....so it may not be a once and done thing and u may think.....
I am 53 and have yet to have mine released....but was told I need to....many of my symptoms had calmed down after my PFD and I have had some return....UTI, leg spasms, muscle spasms....and that weird lower back pain that had me in the ER this summer....still no answer there, but I have a feeling it may be the TCS.
Ur DD is having much more issues, and instead of asking for TCS and chiari work ups...ask for a urodynamics test done on her with her bladder issues....they may find it incidentally....get tests for the symptoms she has
and let them find what they may. I am sure if she has TCS or CM it will be found.
She does not have bowel issues. I will definitely have to pursue this b/c these bladder issues are very unlike her. She has also complained of leg pain when standing for any length of time. I am convinced that I have TCS just based on my sx but can't get a Dr to explore that option. I've had urodynamic studies that prove I have issues. I guess that is what really gives me the gut feeling that my daughter is having issues too.
Thanks for your input.
Well my NS explained u can tell one has TCS by the brain stem...those with it tend to have an elongated one....so it is one way to indicate it since TCS usually does not show on MRI's.
Not all will have bowel issues as well....I just was wondering.....
It could just be the chiari by itself as it can cause bladder issues....
Go with ur gut feeling, mom's have those feelings for a reason....
Keep us posted : )