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sarah in paradiseParticipant
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
sarah in paradiseParticipantI’m quite curious about this q too–I can offer a few thoughts discussed with me by Dr Bolognese at tci a few years back , I don’t know how much may have been learned since .
I and another zebra=zipperhead sort /sat discussing some of our odd /in common symptoms and difficulties with Dr B -one we shared then was an intermittant csf leak , that Dr B felt was perhaps our own inbuilt presure release valve , that because of compliance , acts as that one way out only valve .
In my case , I feel it open up if my head presure feels way up–and a constant post nasel drip starts , comming from the eustasian tube to the back of my throat . Over the years since it started , it’s becoming more difficult to get my head tilted to the exact angle that helps open the leak up . I also find some strange tongue to the top of my mouth -then try to pump the eustasian tube opening through air from my throat ( wiggles some tiny bone feeling in my ear ) -but helps get the leek draining . Soon -perhaps 30 mins -hour -that head pressure is somewhat back down .
I’m sulfa family allergic -so diamox was not something Dr B felt was totally wise to try at that point -I’m trying to get better info on the possible risk right now – so can’t give personal impacts info –there was another med he did tell us about /that can lower the about of csf someone produces , havn’t found the name again yet , but will see Dr B next month if Dr Diana or someone more knowledgable than I am , doesn’t respond .
As to the compliance issue this is aimed at – just a retired nurses first guess here , but I think it might well actually matter what your actual presures are , and how out of whack they can be in some of us . For example , I’m currently having huge pots impacts , and it’s really clear my BP and icp are swinging wildly in response to both physiological processes , and body position upright vs reclined , abd compressed ( think squat or valsava ) -vs deep relaxed breathing with my back braced to keep abd muscles relaxed .
my leek patern can take hours to stop once started , but those wild presure changes happen during the time the leek is perceptable ( it leeks so fast , I’ve got to gulp frequently just to keep the gulps of fluid from becoming way to much IF I try to use the tounge -air pumping trick I somehow found worked years before I had a clue what was happening ).
At that stage , the compliance is clearly in favor of no bug path back –but what about when the ICP seems to go low instead -or bp crashes ( pots -synscope )–gosh , I don’t know more than you do – how this really would play out -so it’s two of us =hoping someone knows more 🙂
My friend who was there during the discussion with Dr B ,and I both had retroflexed od issues as well – when she tiped her head back and tried to swollow ( can’t happen with the retroflextion ) -she sprung a gushing csf nose leek –yikes , lol = we both learned NOT to try that again !
guess I should add , we are both eds /chiari /cci /ect affected –currently add both multiple sclerosis and pots =synscope ect to my situation –but it’s been astounding to me how much science and sharing info has brought bigger understanding and improvement too -I’ve faith we will find some better insight through asking .
Wish I could tell anyone a bit more on this -adding my plee -anyone up to trying to help us both understand this one ( or sulfa allergy risk /diamox -and or what the other med helping reduce csf production is ) -one last thought too – there was q at the time this discussion took place , of biology gone haywire in either overproduction of csf , or under reabsorbtion of the csf -science not yet sure which /or in individuals both perhaps – is responsable for the imbalance seen —and also later I think issues of overall compliance being investigated in chiari /is this stuff understood in eds science yet ? can someone direct us to compliance study or info ?
Sarah in Paradise CA -eds /chiari /cci/ms /pots /multiple allergy’s ect -far to much to keep typing -lol .
sarah in paradiseParticipantpossible chiari or craniocervical instablity issues-in my case , the sliping cci issue causes an audible to me ( and others at times )pop -snap sound /sensation-followed by neuropathic pain spreading down my head base /neck area to the shoulders . My intercranial presure spikes at the same pain wham moment from both perception /and other cranial nerves act up in response too-tininitus, shooting pain in the trigeminal pattern -eye control issues ect , until that sensation of increased presure resolves some .( I am now aware , wearing the hard collar and trying to avoid the movement triggers involved ) .
I do have a decompressed chiari-“failed ” due to eds impacts, and done as surgery long before ties were known . the cci issue is what is said to be causing this sound /sensation pattern .
If this starts to add up toward possible causes for him – PLEASE get him to a chiari /cci aware evaluation within EDS – not a great local neurosurgeons attention –it’s the biggest factor in those who get better with possible surgery’s – or those who get worse when surgery is indicated .
just my first thoughts as a newbie here
Sarah in Paradise
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