I’m not sure how to discribe better what I do with my tounge -internal presure to get the leek started – I’ll try again now to both figure it out ;and discribe it .
I seal the space to the back of my throat by placing my tounge against the roof of my mouth , then try to push small amount of air up from the abd against the eustasian tube opening area ( just change the presure to the whole tissue area ) – a small internally audiable clicking sound happens with each attempt to change the internal presure , and then the leek often will start .
I wasn’t aware until reading here -that discovery heath program has filmed some with The Chiari Institute folks /patients and clinians –but it is the chiari ins. folks – Dr Bologense who first discussed this with me ( and other of us leekers ) , same neurosurgeon/same tx center on Long Island /NY .
I will try to reach the other zipperhead with leeks intermittantly now too =she has a couple other tricks as I recall ( Or triggers = LOL ) -I hope she can add into that might help .
thanks for responding –I’d think about getting to tci soon too, at the time I spoke to Dr B about this , he did tell us , he’d been seeing more and more eds folks with this criptic leek pattern, that it is not easy to spot in studies ( he felt it was perhaps a slow process of the csf seeping through the cribaform plate , rather than a “pin hole leek ” that would be seen gushing dye in a study – more difusing through bone that is filled with tiny channels .
there was very little online about these possible leeks at that time , I believe it was more theory than proven then .Dr B also told us , it can be very hard to see and fix the leeks , at times surgery to no avail. I don’t know if this has changed , so hopefully will gain some insight at the appt next month .
Sending best wishes -Sarah in Paradise