So I called the PA of the surgeon and turns out first available slot is middle of a forthcoming trip abroad, so I'm going to think it over and perhaps book up on my return.
But here's the thing - I'm more and more convinced my MAV (and maybe yours too?!) is actually down to a leak from the inner ear.
There are so many features of it that support this, but simple things like symptoms getting worse when I bend right over or go on my haunches, plus the slight feeling of swaying when sat (small leak in progress?!) down to the bigger but thankfully rare vertigo attacks (big leak), the mini spins in bed (medium leak) and finally this: ever since this began i've had a feeling of fluid in my ear which briefly muffles my hearing when i right myself from sleep. What can this be other than fluid having collected in middle ear that then blocks the eustachian tube as you right yourself and then drains away with a 'bubbling'!! (Do you get fullness in ear which eventually clears? Ever thought this might be fluid in your eustachian tube? From where?!)
Before I started to get the full on migraines I had a very bad cold and coughed A LOT. This can't have played nice with the ear.
So here's what I'm going to do about it: I'm going to be EXTREMELY careful with the least amount of straining as possible and follow all the maintenance advice (which includes use of double pillows!! sound familiar?!) from Dr. Hain's site that is as little of following as possible:
- Bending over
- Popping the ears
- Forceful nose blowing (watch those colds - my PT always said MAV gets 'worse during colds'!!)
- Air pressure changes such as due to air travel (note to self: pack Sudafed for trip!!)
- High speed elevators
- Scuba diving
- Loud noises
... to see if I can't help reduce the fluid in my ear that I experience every morning.
I'm sure my tinnitus is related - possibly the tear is in my oval window which would account for the reduced HF response - or if not is this simply down to gunge on the damp stapes as its bathed in fluid every night?
One last thing - I'm unilateral and this all started with a minor trauma ... so it all fits ... but if you read the paper about the Japanese cutting edge test for PLF it suggests that maybe bi-lateral fistula are more common than previously believed also and I quote:
" As streaming water-like tinnitus is a rare symptom, this could be a clue to the diagnosis of PLF. This type of tinnitus has been a well-known symptom of PLF in national studies in Japan, but is not well reported in the literature from other countries."
Also it states PLF is more common amongst women than men (care to take a guess at % of women versus men on this board?!)
(link in OP top of thread).
Wish me luck ...