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Another perspective, but so close to the 'MAV' experience (PLF/Hydrops)


#1

Here’s a post from the not-so-friendly Healthboards (has anyone here dealt with their mods? AWFUL)

This woman, like me, injured her ear, in her case when diving into water and ended up with MAV-like Hydrops post PLF complaint for which she never got patched.

Here’s her summary after 2 years:

"Re: Perilymph Fistula Sufferers? (and the joys of BPPV)
yes- many people tried to write it off as anxiety for me too. i am lucky in a way that this all started after diving into water… so i knew i couldn’t develop an anxiety disorder from swimming!

i’m pretty sure i have the same thing but i haven’t had too much show up on tests. i’m sure the testing i have doesn’t compare with what u have had. i did see an ent in NJ who is quite versed on PLFs… he gave me a PLF diagnosis but as soon as i come back to canada most doctors say ‘you don’t have that’ ‘if you did, it would have healed’ etc… etc…

i was told i have meinere’s as i have symptoms like meinere’s but i’ve noticed they worsen with activity… everytime i pick something up, sneeze, yawn etc…

i’ve had almost 2 years of this to notice all the small things… my symptoms fluctuate so i have better moments and worse moments.

the best i can describe this as it’s like a storm cloud following you around… you just feel ‘off’ 24/7. anxiety is heightened, fatigue, vision or concentration seems to be affected… i get obvious dizzy moments but i also get times when i just feel that something is wrong and it’s hard to tell i’m dizzy.

i’m still not too sure about my diagnosis and i’d like some more tests if possible. i believe i am also losing CSF so this might complicate things… when my symptoms continue for a while they can get more neurolgocial.

so far, i’ve had head scans, ear CTs etc… nothing seems to have come up."

https://www.healthboards.com/boards/inner-ear-disorders/594531-perilymph-fistula-sufferers-joys-bppv-4.html

she seems to do better after 3/4 years btw, the leak ended up subsiding. I’ve tried to contact her for an update, but she seems to have left that board many years ago.

Her last useful update is some 5 years after her initial injury:

“well- i did but the dumbass dr. i saw locally (i’m in canada) didn’t patch me… long story as he basically screwed up. i didn’t bother with it again since i thought just the op could help in wound healing… which it did. i was consulting with a specialist in Lousiana who I was going to get the surgery thru… he’s well versed on PLFs and fixes many, many of those who were failed by other doctors or who didn’t know what was wrong. but i became pregnant with our 3 child and luckily the pregnancy helped fix things… i’m not 100% but much better these day… hoping it sticks! if not, i am still ready to see the specialist there… there is no way i can go back and live with what i had again… it’s terrible and i never want to be so debilitated again.”

https://www.healthboards.com/boards/inner-ear-disorders/909543-fistula.html

Hope this is useful to anyone who suspects a physical inner ear injury. Having done a lot of research, personal accounts of injuries like this are like fairy-gold-dust on the internet.

Basically, it shows that you can make huge progress towards recovery without surgery, but you have to be incredibly patient.

James


Secondary Hydrops, PLF and my 3rd PLF Repair
#2

patience has never been one of my strong points :joy:


#4

With all due respect (and I genuinely mean that) what relevance does it have for our problems?


#5

Take a look at the welcome post, it’s within the scope of the site:

You will also note the Category of this post.

Also, it’s impossible, at present, to rule out involvement of inner ear in MAV. Given all the ear symptoms people experience, it’s a given if you ask me, and Hydrops has been imaged on hi-res MRI in studies looking at VM patients exclusively.

Suffice to say I have had diagnoses of MAV & SEH after PLF personally

If you look back at the posting history of this site, several board members have had suspected PLF/SEH: you can have SEH but be given a diagnosis of VM as symptoms are identical.

An illlustration of similarity between cases of MAV & PLF/SEH is illustrated here. Note the workup flowchart at the bottom and the wording “Exhaust Migraine/Meniere’s Medical Management”

https://www.dizziness-and-balance.com/disorders/unilat/fistula.html

This is a huge can of worms. I’ve said a lot about this entire topic elsewhere.

The main takeaway, practically, though, is that you need to try the MAV treatment protocol in any case.


#6

I met with a neuro-oto recently in a cafe(should go for pastries there often). I was picking his brain on MAV and hydrops. He said SEH is strictly limited to trauma. He has seen all of them recover successfully within 5 years. He also said there is some research on Classic Meniere’s and MAV having similar etiology due to the idiopathic nature of things largely due to a brain stem malfunction. But on the whole he said MAV is a condition specifically used to denote a migraine/brain related balance disorder.

Considering i have seen folks have this over 10 years clearly this is not SEH but something else altogether.


#7

Or it’s idiopathic in some way … so yes agree that would suggest it’s not trauma related.

I hope you weren’t drinking coffee?! :wink:


#8

sadly had to settle for a croissant without chocolate :frowning: and this was a hospital cafeteria


#9

Oh no! haha … you need to get the oto-neuro out somewhere more funky :slight_smile:


#10

he is not even my doc…i know him cos i know the roster of ENT docs from memory…i would have looked more like a stalker…and he looked like this is not the kind of conversation he wanted to have !


#11

awwww shame … well they’ve looked like that to me in the consultation room. No change there then!


#12

i think the easiest breakthrough in the next decade in this area will be inner ear imaging. To be able to see hydrops and that will give some much needed answers.

I think the brain research on this is more super science and not that easy to crack.


#13

That will surely help.

But as per our recent conversations and my thoughts on this … I’m not sure SEH will image like Menieres - ie I have a suspicion the Reissner does not move (as after mild trauma that only impacts a window and not bone, Perilymph is replaced by CSF?). Evidence it hasn’t moved is no roaring tinnitus and no low frequency hearing loss. In my case I had no subjective hearing loss or tinnitus until the hydrops fully developed.

The VM patients with imaged Hydrops may have some kind of other issue?

SEH is also a funny term. Because I can imagine there can be a form of hydrops that doesn’t involve Endolymph.

I wonder if you can have no significant distortion of internals of the inner ear, but raised pressure. The infrequent leaks take care of keeping things undistorted.

What you won’t be able to see is that some of the perilymph is pure CSF … and you can’t ‘see’ pressure (though perhaps some inner ear organs will show signs of pressure?)

btw, and I quote from the analysis of Perilymph in mice:

“We sampled perilymph from the apex of the mouse cochlea to minimize CSF contamination.”

(from discussion here)

Which implies that CSF does enter the inner ear readily … and perhaps in cases of trauma ALL TOO READILY!

Just a few thoughts …


#14

I’ve got to ask, how did you “happen” to run into this guy in a hospital cafeteria? What were you doing there to begin with? Did you recognize him from a photo and just go sit down with him and start asking questions?


#15

btw, I owe you a few pints :beers: for that golden nugget sir! (/marks 5th anniversary in diary! :calendar: :joy::sunglasses::stuck_out_tongue_winking_eye:)

Please continue to stalk medics whenever you like :wink:


#16

Don’t go for pastries.


#17

Just found this. It’s incredible. You wouldn’t do that, not in the UK. Neuro-otologists are rarer than hens teeth. Took me a month to find one once I’d discovered they even existed. Bet he was furious. Once bumped into my mother’s GP in a small local supermarket, you should have seen the look on her face, she put her fingers to her lips and crept away without a word fearful of being mobbed I guess, or maybe it was the Chicken TV dinner she had in her wire basket.

Still you were brave and a very informative bit of conversation. Makes sense It would seem logical that the ear is easier to treat than the brain. More known about it I suppose.

And there was me, so delighted to get a diagnosis (MAV) after 12 years. Unfortunately not the best diagnosis for a guaranteed time-limited recovery. Ah well …


#18

btw, was just thinking about this … and badoom … it hit me … of course in the case of a Perilymph leak the leak is driven by CSF pressure, right from the get-go. As the wound heals the leak only occurs when CSF pressure is higher (you are reclining) or there is Hydrops (or both). So the last piece of the puzzle will be working out the mechanism that would normally sustain the Perilymph consistency and what happens as CSF enters the cochlear (normally very slowly but now abnormally quickly). I’m expecting to discover that too little Perilymph and too much CSF will cause the build up that is ultimately a perilymphatic hydrops. From here the issue is obvious - the hydrops causes intermittent leaks of varying intensity, resulting in sensory noise and probably the sensation of false motion and vertigo. This is what causes all the symptoms AND the migraines (as the brain routinely fails to cope with all the confusing signals that no longer correlate to motion so well) in Secondary Hydrops.

This model also explains why PLF surgery fails … as it doesn’t address the Hydrops. You can patch all you want, but the pressure will not instantly decrease, and the Hydrops might guarantee that every patch fails. I suspect any significant vestibular symptoms, like vertigo, experienced after surgery, indicate the patch has failed.

So if you have Secondary Hydrops you are best to focus on reducing further trauma (don’t do anything that would increase CSF pressure like heavy lifting) and sit up as much as possible at night and never lie down flat.


#19

Speaking of CSF…


#20

HALF A … PINT … a DAY?! How was this woman even walking around?!


#21

This is quite a nice article on Cochlear & Labyrinth fluids:

http://www.cochlea.eu/en/cochlea/cochlear-fluids