I've had it guys ... I'm going to look into Perilymph Fistula (PLF) surgery

Non-Pharmacological Treatment
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Like you I’ve been a saint wrt patience with this condition.

Going to try to get an appointment with one of the ENT Surgeon’s I’ve seen to discuss the option of exploratory surgery for PLF.

Every morning since the very first incident I’ve woken up with fluid in my left ear which appears to muffle then drain away as I get up. Sometimes this sensation wakes me up in the middle of the night and I have to sit up to make it clear.

I’ve gone over this a thousand times in my head and in conclusion I believe I may have a fistula.

Just a chat this time, no commitment. Last time I saw him he concluded that I had probably had a PLF at some stage and it may have healed. I’m not so sure.

Incidentally can anyone recommend a surgeon who has a good rep for PLF repair? Preferably in the UK but happy to travel if the guy/gal is a genius.

I’d rather not leave it and see my hearing worsen and like you I’m sick of the symptoms and it’s impact on my life.

Cheers

James

PS the conclusion of this paper describing results of a broad clinical trial of a new test for PLF is huge, it’s suggesting that PLF may be more common than recent medical dogma has suggested and they include patients testing positive for PLF who have no history of trauma!:

http://www.tandfonline.com/doi/full/10.1080/00016489.2017.1300940

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Good luck James and be sure to keep us posted.

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Thanks a lot Margaret! Will do. If it works out I’ll wonder why I ever put up with 1.5 years of this and at least 6 months of hell on earth for the sake of one minor 2 hour op!

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Good luck with your decision, James! You are obviously very well read and are going into this with your eyes wide open. I sincerely hope it will put an end to your problems.
Looking forward to hearing how it all goes!

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Thank Beth. I have an international trip coming up so I may not commit to anything just yet but will try to get the verbal done this week if he has any slots.

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Sorry about your situation. Be sure to ask “How many of these procedures this doctor has performed?”, “What is the success rate?”, “How long do the results last?” Of course, Dr. TC Hain has a good review of this issue: Perilymph Fistula It is a very rare condition. Good luck and let us know how you do. (www.vertigotalesandtastes.blogspot.com)

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Thanks Spinninggirl, yes I absolutely will.

As per my linked article in my OP I wonder if that is about to change?! Are we on the cusp of a big change?

Yes, I’m very familiar with Dr. Hain’s excellent article. Doesn’t it strike you as interesting, though, how close the symptoms are with MAV? Even more so that Meniere’s. The other suspicious element is have you seen the workup flowchart?! “Exhaust Migraine/Menieres medical management” … that speaks volumes!

I’m aware of the current view of many ENTs and Oto’s on this and all the controversy, but it all feels very ‘dogma’ to me, as does the complete lack of explanation for ‘MAV’.

Naturally I would love my own body to heal itself and I was prepared to wait a long long time, but what if it never heals?

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If you have had a chance to read my blog, then you know that I suffered for several years until an otoneurologist at a research university hospital diagnosed me with "Silent Migraine) and placed me on the migraine continuum. I now have a very manageable life. Carefree? NO. But I have a routine that works for me. It took me 4 years to wrap my head around the whole program. This is why I encourage everyone with these symptoms to try the approach out of Johns-Hopkins. It has been working for people for over 10 years. I would certainly want you to try it before going in for surgery. You are a science man. Just try it for one month, take daily notes and see if you find results. I think you are already on Amitriptyline. Just eliminate the 6 C’s or go all the way, like I did, and also limit dairy and tyramine foods. I had to stop the neuro triggers - caffeine and alcohol being two of the big ones. Now, I am mostly off medication and I can rotate small amounts of stimulant foods. But I never have caffeine or alcohol (except a tablespoon or two in cooking or a few small sips at a wine tasting). Maybe forget about the “diagnosis” and just see if the solution works. It’s work but you are used to doing the work. Good luck to you. (www.vertigotalesandtastes.blogspot.com)

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Sure Spinninggirl, I completely get your programme. It makes sense. I’ve noticed an increase in my migraine rumbles after caffeine and chocolate. I’ve completely eliminated caffeine now. But if there is a way out of having to care so much about what you can and can’t do and if there is a definite root cause that can be addressed without significant risk then …

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I hear what you say James. To be able to live carefree again would be blooming fantastic! I spend my whole life trying to avoid known triggers.My digestive system is buggered now so I am limited beyond belief and it is so blooming restrictive, so if you find a simple and safe solution that really works I applaud you for trying. A lifetime of being careful and hoping for the best is not always the way to go as long as you are safe. You have always thought your problem was your ear so there is no harm in investigating and I know you will take care, research everything within an inch of it’s life and then decide.:grin:

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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:

  • Lifting
  • Straining
  • 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

(credit: Perilymph Fistula)

… 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 …

Cheers,
James

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I am really interested James because yes, I do get the same symptoms which I have often wondered whether they are somehow related to the eustachian tube. I have even tried to clear it! There are exercises on line which I tried but they didn’t work sadly. I even wondered if I could get a small enough syringe up there to vacuum it out!!! No I didn’t try it, but I have considered it. The ear pressure changes and weird noises just pointed me in that direction. Funnily enough, yesterday I had pressure changes in my bad ear and the tinnitus was really quiet so I was pleased. I have no idea what caused it though.

I, of course, wish you all the best. I so hope it works for you. You are more than two decades younger than me so this disease must be even more frustrating for you and all those other young people. It is hard enough for me so must be the pits for you. Just keep us posted and let there be an end in sight for all of us who struggle on a daily basis not to upset the beast!

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Margaret if I’m right I suggest you don’t try to clear it as any pressure might exacerbate the tear if that is what you have. Just let it drain naturally when you swallow.

Yeah my tinnitus changes with pressure too. It’s delightfully quiet when up high in an office building.

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This is all very interesting to me! Looking forward to the results of your experiment with keeping the ‘pressure’ under control. I have always felt that the tinnitus is ‘related’ to the feeling of fullness in the ear - be it due to fluid or air pressure.

Definitely wishing you luck! As Margaret says, it is far more important for those of you who are still young to try and sort your problems out as soon as possible. There are enough little problems that pop up as you get older without having to deal with the limitations this beast imposes as well!
Holding thumbs and sending good vibes!!!

p.s. - enjoy your trip!!

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Thanks Beth. I just hope MAV doesn’t spoil it!

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Kick it in the butt…just don’t strain yourself doing it!!!:slight_smile:

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wow, I feel anything that has something to do with the inner ear is worth looking very carefully into as why suffer if we don’t have too? I try not to let this condition control me ie my two day hangover is off scale haha but my symptoms never increase with or after a boozy session they just stay the same so I carnt understand why this is as alcohol is suppose to be a huge trigger, all this trying to figure stuff out wears me out more than a 12hour booze session lol I wish you every bit of luck james!

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Alcohol would not make a PLF worse (or better )

Thanks. I’m going ‘conservative’ for now. May even look for best surgeon in Japan for this.

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Just thought I’d add a quick note to avoid people being too bullish about PLF surgery:

  • It’s worth noting Dr. Hain estimates that 66% of surgical procedures fail!!
  • He believes that the patches used are not much better than putty.
  • I personally suspect that if you have a PLF, it may well heal, but be re-opened periodically by pressure from within in the form of a degree of Hydrops (increased pressure within the inner ear) that built up to compensate for the leak. If that’s the case then the surgery is not the end of your challenge and may be pointless
  • this might end up in a repeated cycles of vertigo attack (breach) and healing
  • It might be that the ear evolved to heal like this and you cannot do anything to beat what the body does for itself - you have to put up with the pressure and the occasional vertigo attacks until it eventually settles down (we hope!).
  • having looked at cases where surgery was employed, the hearing loss prior to surgery was quite significant … and whilst surgery generally improves the hearing, its not guaranteed to do so and not at all frequencies - one guy clearly lost MORE HF hearing from having the surgery (but who knows it may have come back later). If you do not have significant hearing loss I suspect surgeons may not be comfortable operating on you as they might feel the risk is too high and the body may do a better job of repairing the more minor damage.
  • I hypothesise that MAV maybe cases of variable hydrops in the ear having developed from PLF that subsequently healed but the pressure regulation has gone into hysteresis and may take a long time to settle. That model pretty much explains MAV tbh.

This said I will still book that appointment soon …

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There is nothing to be lost in having a discussion with those in the know and armed with all of your research you are able to ask pertinent questions and search for in depth answers which your every day patients who haven’t done their research are unable to do. I would love to be a fly on the wall as most physicians are somewhat nonplussed when patients actually know what they are talking about.

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