EDS,CCI and Chiari

[Graceface8]

So my PCP mentioned that he felt my NS missed a Retroflexed Odontoid and he also felt I had evidence of CCI and symptoms of EDS.

First and formost what does all of this mean haha

The retroflexed odontoid doesnt seem good but I really dont know. I am not surprised about the EDS I have mentioned symptoms of it for 2 years now since I learned about it.. the CCI I am not surprised either since some days it feels like i can barely hold my head up.

My main concern is that I ride for the United States as a Para Dressage rider (horses) I know most of you are cringing but riding is a personal choice and a risk I am taking. However there are things I am not really willing to risk... How much more dangerous is it added the EDS and CCI? I am considering another sport to try to get to the paralympics but I wont give up being active....

Anyway I am worried about all of these things and wanting to know about EDS,CCI, Retroflexed odontoid and what it means for me Surgery wise does this mean i am more likely to be taken serious by a specialist? How much would an EDS diagnosis complicate things and so on....

[Graceface8]

I really dont know the extent I am now looking at finding an EDS Dr. I have heard the one at CC is not very good she said EDS is very rare with Chiari.... therefore I am looking at an EDS Dr. I am thinking of Mayfield Chiari Center

[selmaS]

   Well the implications of having all of these is u may continue to have symptoms not resolved by ur surgery....many times someone will say their surgery was unsuccessful when in fact the reason they do not feel well is the other conditions not being addressed.

CCI is a result of having EDS...and when having decompression if too much bone is removed it can make the CCI worse.....and a fusion is generally needed....

EDS can also cause set backs with issues like a CSF leak or rejection of the dura patch....stitched ripping or tearing....and many with EDS are just slower to heal...we also have issues with anesthesia....and meds.

A retroflexed odontoid  can continue to put pressure on the brain stem....

I also have a RTFO....and mine is not a complete one...it did not rotate around completely so my NS made room so it was not going to be an issue...and I have CCI, but so far I have been able to manage to stave off another surgery by avoiding certain activities....if I were in an accident or fell hard, it could change things for me, so I am extra careful.

Do u  know to what extent ur CCI and RTFO is?