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


#41

Oh my goodness, poor you … yes … you need to get that addressed before things will improve properly.

Yes, do consider changing to a less physical job - my thoughts on this is that you end up with some inner ear hydrops after such procedures because you inevitably get a leak, which will take a long time to rebalance, and heavy lifting exacerbates mine … your mileage may vary.

I think I should clarify that my advice to be conservative is aimed towards those who’ve had mild trauma, not a cholesteatoma.

A lot of people think they have PLF whereas the real culprit may be the hydrops it leaves behind I suspect. No amount of surgery on the outside can fix that. This may be one of the reasons why there has been so much controversy.

But in any case always discuss this with a qualified expert before making a decision.

Btw, someone on here did well after such surgery.

Best of luck with it!


#42

Thanks! I have had 2 falls on my left side, actually. Cholesteatoma is actually under control, according to the neurotologist–about as qualified an expert as they come! He is thinking BPPV, maybe migraine (I have a history)…I’m thinking both. Next stop is vestibular therapy and a visit with the neurologist!

Doc also said that I still could have PLF–but he wouldn’t recommend surgery since my case is not so bad that I cannot work, and a fail on that surgery would be uber-bad.

Step by step! We’ll get 'er figured out. :slight_smile:


#43

Out of interest, how have they come to that conclusion? The radiology or did you have surgery for this?


#44

I can only go according to what the neurotologist said after peeping in and cleaning out my earball, y’know?

I do think I’ll ask for a bilateral CT, though, to confirm/exclude PLF, to know if I can ride in an airplane or not, and also to see just how much I need to move jobs. Doc did say CT was a possibility, but didn’t press me, btw.


#45

Don’t believe a CT will help wrt to PLF. They only give you a CT before PLF surgery so they can rule out SSCD.

MRI is also not hi enough res.

The only way to find a PLF is by exploratory surgery at present, where the surgeon can use high magnification optics. But there is so much controversy in this space.

And in any case there is no evidence to suggest PLF doesn’t heal by itself.

Hain states that 90% of his suspected PLF patients heal spontaneously. They are put on drugs given to MAV patients. Which says quite a lot …

He implies some of the remaining 10% may not have had PLF …

There is anecdotal evidence that PLF is exacerbated by Hydrops and won’t ‘heal’ until the Hydrops has calmed down. This can apparently take years