PLF surgeon

I feel for you. I’ve had just enough improvement to keep me sane. Chronic vestibular conditions are the pits!! :rage:

@lduet is from Louisiana I believe, not sure who she’s been seeing.

Did you experience ear/head trauma? Haven’t you noticed any improvement in all that time?

I had trauma to my left ear. The PLF presumably healed but I ended up with a diagnosis of MAV and Secondary Hydrops. Only the obvious trauma persuaded my current doctor to agree it was likely SH after a healed PLF. This has improved over the years but I’m still not 100%. Once you get Secondary Hydrops it can take years and years to calm down. If you dig into the anatomy you see why. Once you’ve had a significant leak of perilymph the fistula itself is only part of the problem: the resulting fluid imbalance is not something which resolves quickly and causes all kinds of risks for exacerbation and mischief.

Avoiding surgery was the right decision for me as the fluid leak in my injured ear has all but abated (but returns if I’m not careful with diet - this is the Hydrops behaving badly). This took about the same time as another PLF sufferer I saw on HealthBoards who got hers diving into a swimming pool: 3.5 years. I still have inner ear pressure though judging by various symptoms especially tinnitus. It’s a very gradual improvement.

The unilateral injury gave me slight symptoms on my good side: demonstrates to me there is some element of global fluid regulation that affects both ears. This has calmed down on my good side.

I’m not qualified to diagnose but we know a few things about PLF. I’m sure you are well versed but I will restate these things in any case:

  • Chronic PLF (especially bilateral or without trauma) is a contentious diagnosis so you may get resistance from some doctors to recommend surgery

  • There is no definitive, reliable objective clinical test available outside of research projects aside from surgical inspection when they usually patch in any case.

  • It’s often followed up by Secondary Hydrops which itself can then last years. I noticed a guy on Healthboards took about 10 years to recover!

  • Surgery might be worth a try but may not cure you (Hydrops!) and there is a risk you might worsen things. Someone posted on here about going deaf after a failed PLF patching. Make sure you see someone with an impecable record!!

https://www.mvertigo.org/t/finally-got-my-diagnosis-not-mav-plf/3636/21?u=turnitaround

  • a one off surgical solution can be a compelling, attractive idea but the success rate isn’t good (but the stats themselves are not reliable because there’s no reliable clinical test)

  • Seems to me most doctors fall into one camp or another. Some are convinced by migraine, others by PLF, yet more by Hydrops. Some tellingly have a curious bias to one diagnosis. Be careful.

Agree with @GetBetter: Since 2009 (and 2013) MRI has improved a lot and you may get additional info from a cutting edge 3T scan (downside is they aren’t cheap, apparently!)