Does anyone else have a positive perylimphatic fistula test? (Do you get dizzy when you stick your finger in your ear?)
I’m skeptical of this test. If you take an ear with Hydrops and pressurise it I’d imagine one might feel dizzy and get increased tinnitus to boot. When I’m in a tall building on a high floor my tinnitus generally decreases and is sometimes eliminated only to return when I get back to ground zero. I’ll put that down to a minute reduction in atmospheric pressure. Which just goes to show what little pressure change you need to cause or remove symptoms.
I read a paper from a Japanese team that have developed a test for perilymph fluid. They wash out the middle ear with saline and then test the fluid for evidence of perilymphatic fluid. If it is present it proves there is a fistula. Not sure this has been adopted yet. Unfortunately it requires exploratory surgery to get to the middle ear space which may be why.
EDIT, found the article: Cochlin-tomoprotein (CTP) detection test identified perilymph leakage preoperatively in revision stapes surgery. - PubMed - NCBI
Also check out posts from user ‘ichbindarren’. He had the PLF surgery as he had a suspected PLF but unfortunately it didn’t resolve his symptoms. I’ve heard a similar story from an ENT concerning another patient. I would take multiple opinions from qualified surgeons before considering it as the last thing you want to do with an upset inner ear is unnecessarily insult it further. Hydrops/Menieres/MAV/Ear Trouble have very similar symptoms. A surgical solution is very attractive but the story might be more complex than that and you may have to be patient for your symptoms to improve, and they may do so spontaneously?
It’s a very frustrating state of affairs that we have such a poor level of definitive diagnostic capability, perhaps one day they will be able to image the inner ear with sufficient clarity to accurately distinguish each of the issues.
Just my ten cents …
I have multiple opinions and everyone thinks something different the difference between PLF and the other disorders you mentioned are the duration of symptoms. Only MAV is another condition where the symptoms would be 24/7. I am very hesitant to get surgery, there isn’t any proof one way or another
Agree, its not a great state of affairs. I’ve gone through many thoughts and different theories too. Even this morning I wondered if maybe I’m wrong the way I’ve recently been thinking and in fact I have a PLF?? (If I increase the pressure in my ear by clenching my jaw and I can encourage a bubbling sensation when laying down). Is that bubbling internal to my ear or indicative of a leak??
I remain open to see evidence that proves this condition to be one way or another, but there just isn’t that level of detail available it seems. Crazy given how far ahead other disciplines are. The one thing I’m pretty sure of though, is that migraine is a symptom: its not to blame!
How you getting on Danielle? You surviving on supplements only? I recently tried to titrate down a little and it reminded me of how tough things are without the support of medication.
I have been for 4 years and am starting to wonder if I should try the meds:( I can’t take it much longer. I hate feeling so limited I haven’t felt free to move my body or head in 4 years!
Well if it’s any help please try amitriptyline first. It made a huge difference for me. My main trigger was motion and it made TV and computer watchable again. I’m still on only 20mg but got my life back. Relapses and sneak through symptoms still happen but it’s all going in a positive direction.
You were super sensitive to your own body movements?
Well let’s just say that going on haunches made me dizzy for hours after (annoying for an amateur photographer ) and VRT gave me a migraine almost guaranteed.
I’m pretty sure I don’t have a PLF as I had a cessation of symptoms for 5 months and did a lot of gym including hard rowing and none of that made me dizzy.
I believe I have Hydrops tbh. I can tell the pressure in my ear is higher than it should be. It’s pressing against my nerves so I get tinnitus. And I’ve got some minor but annoying high frequency loss. I think that is the result of the high pressure dampening the window movement and the result of pressure on the ganglion perhaps. If it were to lower my hearing might recover somewhat and the tinnitus go.
Ya I wouldn’t be able to row and feel okay. I would be super sick from both the motion and pressure
Weird how it came back.
Can I jump in conversation. . I was initially diagnosed with PLF in left ear in the early nineties. At that time I had a positive ECOG on left side and positive Lasix testing .I had a date for surgery and decided to get a second opinion.
My symptoms have always been 24/7 including oscillopsia which I do not believe is a symptom of PLF.
My second opinion did not agree with the diagnoses and I cancelled surgery. My symptoms remained constant.
Fast forward to 2016 and major symptoms now showing hydrops in both ears. Went back to see ENT who initially diagnosed PLF 25 years earlier and he stands by his diagnoses. Yet, my PLF testing this time around (lasix) was negative.
Now, my diagnoses based on other multiple opinions from vestibular specialists is MAV. My ECOG s are abnormal yet these Doctors will not venture to call it as PLF or Menieres.
So, i too am a mixed bag. Be very cautious before you decide on any surgical procedure. One does not want to create more problems if uncertain about PLF.
Turnitaround, I’ve heard about the testing which you’ve shared. It’s better than
what’s available now. Lasix testing and ECOG are questionable at best.
Turnitaround, I’d be inclined to think that your tinnitus is caused by your hearing loss . Have you asked your Doctors about this?
So you had a positive fistula test? You’ve been living with theae vestibular symptoms for 25 years!?! Has any meds for MAV helped?i know a girl who had PLF surgery and has the same eye problem as you. She feels better after surgery!
I think it’s more complicated. Sure tinnitus and hearing loss often go hand in hand. By why either?? And why does the tinnitus fluctuate significantly?? We are not talking about age related hearing loss. My bet is mechanical pressure of ear fluid could change the frequency response of the cochlear/stapes set. The ear is in part a mechanical device. I’ve read loads of papers where hearing has recovered. Even menieres patients have accounts of hearing fluctuation. And some people talk about their tinnitus improving. How does that happen? PLF patients, in particular, show significant recovery of HF after successful surgery (or would it have recovered anyway?!) . Why is that? It’s just a mechanical procedure ? What about Hydrops? Is it always permanent or does it sometimes recede? One ENT told me Hydrops can 'burn out '. What does that mean and what happens to the pressure and what effect does that have on hearing? I’ve found frustratingly little about hydrops online.
I’ve been living with symptoms since 1975. that is when this nonsense began. Yes, my PLF testing was abnormal in 1993 now PLF testing is normal. The Doc who made the initial diagnoses way back when still believes I have bilateral PLF to this day.
I can’t take the chance of going in for surgery when other testing points clearly against a PLF diagnoses.
Treating the MAV with Nortriptyline 25mg and 300 mg of Gabapentin. it does help. Yes, I have off days but can function and it does not help my Oscillopsia at all.
I was told that Migraine can damage inner ear. Hence, hydrops and tinnitus.
Turnitaround, I agree with you that it is very complicated. You are right about hydrops causing fluctuating hearing loss. I also feel that there is a"mechanical" component. For example, if I shake my head side to side, I can change the sound of my tinnitus. Odd right? I’d like to know what happens at that moment.
. I hear the he term burnout used by many Menieres patients. I wonder what actually happens at the point where one is left deaf yet vertigo subsides.
You are correct , there is not much info on hydrops except it’s association with Ménière’s disease. Check out secondary hydrops. I believe that’s what happening with me. Will be seeing a ENT who specializes in autoimmune issues of inner ear. Maybe she can shed some light on bilateral hydrops.
Danielle, were you given a PLF diagnoses?
I’ve read that if you can address the cause of the ‘secondary hydrops’, the hydrops will resolve. I have found no evidence of anyone achieving this documented online, though, except one guy who said he’d recovered from ‘cochlear hydrops’.
I can usually make my tinnitus increase by jerking my head to the affected side, or clenching my jaw very hard. I used to be able to increase tinnitus easily by bending over or twisting my neck! I conclude the pressure has actually decreased a little from where it was 10 months ago as its a lot harder to increase on demand now except when I’m very symptomatic, like after a big dinner and coffee
I was given a PLf diagnosis by one doctor and MAV by another doctor. I cannot distinguish the kfference between the two. I have no migraine typical headaches,ever and have a positive fistula test that is now negative with the same symptoms just milder.
Like I said before, I imagine a bad case of Hydrops could mimic a PLF positive … if you FURTHER increase the pressure in your ear you are going to get dizzier and have increased tinnitus.
I am VERY suspicious about PLF diagnoses … if you have Hydrops and its a condition that CAN resolve spotanteously, then a PLF surgery may at best do nothing. If then the Hydrops resolves itself, the ENT surgeon jumps up and down at his successful surgery stating that he cured your PLF. Given there is no absolutely certain evidence of PLF in the first place, nor a resolved one after, the PLF is a compelling story but could all simply be a myth, and one put about by ENT surgeons to drum up business or at the very least by doctors who mean well but don’t really know what’s going on!
Wanted to revisit this thread because my opinion has changed.
Having been told I almost certainly have secondary Hydrops got me thinking.
I have observed my symptoms over the last 2 years and now believe that I have Hydrops and a weak window. You might call this a fistula but it’s got to the point where it doesn’t leak during the day, only at night when I get vertigo usually shortly after I lay down. It happens especially if I cough or sneeze in bed. This suggests to me you can have a fistula at various levels of healed and no doubt the recurrent vertigo ends up ‘driving’ the Hydrops. I can imagine this pressure then impairs the fistula from fully healing so it remains weak. And so you end up with chronic condition which is neither PLF nor Hydrops but is both.
Worse, I am now getting symptoms in my ‘good’ ear and I suspect this is because some part of the fluid regulation in the ears is ‘monophonic’. I’lm getting over pressure in my good ear because the body is attempting to repressurise the bad ear and perhaps it may do this in a single channel, eg with a blood borne hormone.
Reading medical papers for ear disorders is the stuff nightmares are made off. Sometimes too much negativity in the papers.
I read of a condition called Contralateral Endolymphatic hydrops. Where one bad ear with hydrops will start affecting the good ear as well. Which clearly means there is some central brain components which regulates pressure in both ears. For some reason it tries to mess the good ear in the process of fixing the broken one.
I have decided to stop reading papers as it can make you suffer from confirmation bias.