Hi Barbara
Thank you for your detailed reply.
You certainly do sound a pretty switched on person to be able to look at your own x-rays and scans and try to make some sense of it all when Drs here cant always help past a certain point.Not an easy task!!!
It is complicated stuff, but i have been reading up on CCI,and more so on Chiari now that i am bot so sure it has been “ruled out” totally correctly. I had a look a my MRI scans from last year and they were correct in that it isnt full blown chiari (or a 5mm drop) but to me it does look like mild herniation, although i am not an expert, from other images on the internet of people who suffer with milder disformations of Chiari mine doesnt look too dissimilar.
The main biggy for me though is the difference sleeping upright, and with a collar on. My rigid collar still hasnt arrived but i found one of those pump up ones in the cupboard and gave it a go lol. You can actually adjust the height it stretches your neck quite well but the only thing is becuase its sort of plasticy it can make you hot and sticky which is bit uncomfotable. I have worn it two nights like that now and with the diamox of course and i have managed no headaches for two days. This is unbelievable for me, slight neck ache when being in the car but it did go. SO the next test is to wear in the day and see what happens then. I suspect there is some sort of compression going on and thank you for pointing CCI out to me as this is a direction i wouldnt have thought of as i pressumed from Drs nothing on my MRI or CTS had any impact.
Can i ask please, when you talk about putting the neck into flexion, when i look down it causes huges problems for me in so many ways, but if i actually have my head to the extreme so that my chin is in my chect if you know what i mean, if i was like that any longer than a minute i would always trigger one of those awful “migraines” with in seconds. Surely chronic migraine can not be triggered by having your head down like that, i would think that would be a major indicator of something cranial too? I get a dull pain in the back of my neck and lower head when looking down or extreme left to right, and the very painful stabbing pressure behind my eyes and forehead with nausea is immense. Does this sound like classic CCI. Is therer a name for when you describe our peg like bones in the c2 area being the wrong way? I couldnt find it. Is this another EDS common thing.
But thanks again, i am going to continue reading and experimenting with the cervical rigid collar as soon as it arrives. Sorry for all the questions, its just this could be quite relevant for me i feel
best regards
Nina