February 14, 2014 at 9:07 am #668GingerLoxParticipant
I have been searching for the last 12 years for a doctor who specializes in cranial CSF leaks. I didn’t understand how it related to the rest of my (and my 2 daughters) complicated health history until I stumbled over Dr. Diana’s awesome website. I’ve been to Mayo several times, Texas, and all over Kansas City…etc., regarding the leak. There have been many great doctors attempting to help me with this but none have been able to find the location of the leak, in spite of the fact that beta-2 transferrin was found on my pledget studies, and that they’ve seen CSF fluid flow out of my nose, and heard the dripping in my ears via stethoscope. The issue for the inability to locate the leak seems to be that the doctors are unable to accept the “ear” leak portion of the picture. They always concentrate on finding the breach in my sinuses rather than the ear structure (but I KNOW the fluid is leaking through the ear…then through the eustachian tubes…then out of my sinuses). Another challenge for locating the leak is that I am unable to have an MRI due to my pacemaker. BUT, on to the point of this posting… through all of the doctor visits related to the leak I have come away with an understanding that it is IMPORTANT not to allow the brain fluid the chance for negative pressure, which reverses the pressure flow of CSF. I was considering seeking a doctor to ask for the DIAMOX but I got to thinking…isn’t it possible that by lessening the pressure of CSF in the brain…the outflow might be affected, causing a possibility of negative pressure at the site of the leak, causing back flow of CSF which could allow bacteria to enter the brain fluid risking meningitis? Any thoughts?February 15, 2014 at 1:44 am #4865sarah in paradiseParticipant
I’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 .February 17, 2014 at 11:44 am #4883sarah 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 ParadiseFebruary 17, 2014 at 12:14 pm #4884BarbaraParticipant
Dr Perrin mentions in his book that CSF should come through the cribriform plate once it’s outlived it’s usefulness. I vaguely remember a study done on sheep where dye was put into CSF to find it’s natural drainage paths and the holes in the cribriform plate was one of the routes, in fact more than 50% was shown to escape this way, into the lymphatic system. I wouldn’t particularly think this would be noticeable though, more of a natural outlet channel.
(UK)May 31, 2014 at 4:26 pm #5018in_the_knowParticipant
Hi Dr. Diana & others. I believe I may be able to help you, and at least point you in the right direction. If you will go here: awellworld.org you find find a treasure trove of information that will help you. There is a case study where a patient had leaking CSF, and other symptoms, and was able to be cured of everything. The paper can be downloaded for free with simple registration. It could be used to show a doctor what was experienced, why it happened, and how it was treated. That link was mentioned on the “Alzheimer’s” page. There is also a leaking CSF poll on a page categorized “Other” illnesses. I know it has a lot of potential to help a lot of the issues I’ve seen you guys talking about, and shed light on everything.
Really hope this helps you. Wish you all the best too. 🙂
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