Thanks Spinninggirl. Very true about water intake. Trying Nettle Tea at the moment. Boy it makes you visit the bathroom but hope to see some improvements …
This is my first post on any forum, anywhere but I came across this thread whilst researching PLF. I had PLF surgery in November last year, where the leak was large and seen by the surgeon. My experiences of this are (if it helps at all):
The Surgery was the worst op I’ve ever had (it was my 10th operation, I’ve had Endometriosis and it was way worse than a hysterectomy). The Vertigo post op was severe and lasted hours. The symptoms worsened post op for about 2 weeks and I ate mush for that time because each jaw movement set it off so please be prepared
Do what they tell you to do post op in the States as the info given here (the UK) is a lot less, ie I slept upright for 8 weeks, talk minimally, no lifts, no underground, no lifting anything (not even a kettle), DO the 8 weeks total bed rest.
Keep the dressing in the ear moist with the stuff they give you, it makes it far easier to remove the dressings.
Sneeze with your mouth open, don’t blow your nose at all, don’t strain on the toilet, do not bend forwards at all.
I am pretty sure that despite following everything to the USA letter and more (because my symptoms were totally debilitating prior to the operation) that last week the patch failed and daily vertigo has returned (along with tinnitus, sensitivity to noise etc). I am likely facing a 2nd operation although I’ve been told this is as likely to fail as the first although I will definitely lose hearing because of the amount of packing they will use next time.
If it helps, my surgeon is at The National Nose, Ear & Throat Hospital, part of UCLH London and he told me that he is one of only 2 surgeons who perform PLF surgery there, as PLF surgeons are quite rare in this country (UK). He also said the surgery has a high rate of the patch failing which is why they only do it as a last resort.
I have read in material in the USA that CSF leakage causes migraine type headaches and I did suffer badly with terrible headaches and neck pain prior to the operation.
I hope some of this helps you, I know exactly what life is like with this condition so I am so sorry you are suffering too.
Hi Tina, thank you so much for posting.
You have experienced the worst fear of many PLF patients it seems - Dr. Hain claims that the surgery fails 66% of the time, so unfortunately the odds are stacked against us. Another poster on here, ‘ichbindarren’, had a suspected PLF and surgery seemed to fail for him too, though there was no positive proof of a leak. However, he has made a lot of progress since. This is a very contentious area, but my suspicion is that many MAVers do in fact have a PLF and this is why our symptoms are chronic. It seems that the current trend is for people to medically manage with the hope of the hole eventually healing over.
My best wishes to you this must have been heartbreaking for you to have symptoms return! Do you know which window is affected and have any idea what caused your PLF?
Out of interest do you have any sensation of fluid in your ear, even briefly? The reason I’m convinced I have a PLF (however minor) is that every morning I have a sensation of muffling and or bubbling in my ear for several seconds as I get up out of bed. This appears to ‘drain away’ as if in the middle ear. I have also had the experience of significantly increased and long lasting dizziness if I crouch down on haunches and get back up, as if the extra head pressure causes the leak to worsen and/or the inner ear to lose pressure rapidly and upset my equilibrium for a few hours.
I’ve had all the "MAV’ symptoms including variable imbalance and tinnitus now for about 1.5 years and almost every day of that time i’ve had this fluid sensation.
HOWEVER, two weeks ago during a holiday abroad the fluid decreased drastically and for two weeks I’ve had almost no or zero fluid in my ear in the morning. This has been combined with a little more reliability and a lessening of my symptoms such that I was able to be a completely functional tourist on a major trip across China. The only symptom to get not to get better recently so far is tinnitus, though its a lot better than it was one year ago. I wondered if the long haul flight helped where I slept sitting up for a change.
I would take a minute before you try the surgery again - what about the option of waiting a few months to see if it time resolves your symptoms spontaneously? Its a tricky place to heal and I can only imagine your body is actually working overtime to heal the hole, its just that pressure and fluid makes it a difficult place to close up.
Hain says that 90% of PLF’s heal themselves … maybe yours simply needs more time? It seems you can count this time in years, not weeks or months.
I completely agree with the care you are taking with management of it, but you have to let nature take its course?
I’m still off to get some counselling from a well known UK inner ear surgeon this month to get his opinion on my progress.
I would think hard before risking your hearing to further surgery - how bad was your acute hearing loss and has it stabilised or worsened? Hain’s advice is to wait and see if your hearing is not deteriorating further … its tough to say if this is good advice, but at least its seems sensible? My hearing was unaffected initially, but then MAV hit - I’ve always wondered if this was the pressure increase as the hole got closer to healing and this is down to Secondary Hydrops?
All the best with your choices and keep us posted, we all know how hard it is to live with an ear condition like this,
I’ve had 5 years of this so far, initially happened following an operation for Endo and yes, it initially semi-healed itself for long periods with only occasional bouts of symptoms, strangely usually bought on by a trip to the dentist. However, the last 2 and half years since my car was side-swiped by a lorry at 50mph (it is well documented in the USA that this can significantly increase PLF) have been chronic and totally disabling; dizziness and hearing loss lasting 12 hours at a time, any even minor movement would set it off, and happening sometimes twice a day. Amitrip, Carbemezapine, botox injections in the side of my head to numb the nerve, nothing worked at all. This is why I bit their hand off when they offered surgery as I literally had no life at all and was bed-ridden.
Although I have all the classic PLF symptoms, for 5 years it was missed by 3 ENT’s (one professor of ENT saying the problem was categorically NOT an ENT issue) and 2 Neurologists. I was offered Psychiatric counselling by one of the Neurologists though because I was clearly making it all up!
However, once I got to UCLH they were brilliant. To answer your questions yes, I do get the sensation (and sound) of fluid rushing in the ear, as well as so much pressure it feels like something is going to burst out of my ear from the inside. Yes, this is worse in the morning when I get out of bed, this is apparently due to the large change in pressure when the head goes from lying down to a raised position. (This is why when you have a PLF operation the USA says you cannot lie flat and have to sleep upright, it relieves that pressure)
Having said this, I get that feeling of running water inside my ear, followed by pressure build up at all times of the day too though, it seems to have a mind of it’s own and can happen even when I’m just sat watching TV. Then there is the sensation and sound of an explosion and bang deep in my ear too that literally makes me jump. Crouching on your haunches in my experience is second only to bending forwards, so yes it can cause more fluid to leak which in turn causes the dizziness and deafness and yes, I agree with you again, it clearly causes extra pressure on the system somehow. Mind you, how one is supposed to live a life without ever reaching to touch the floor I am yet to fathom but I have perfected an odd balance of going down on my haunches whilst leaning backwards to pick something up.
I agree with you that there are more people with PLF’s than are diagnosed, my experience is that local ENT’s don’t even know what it is, let alone know to spot the symptoms for it. As you clearly research a lot yourself, you may be interested to know that a team in the USA did an experiment using post-mortems on a random group to see how many people had a PLF even though they were showing no symptoms for it, the percentage in the group of cadavers sampled was over 30%! Surely that would suggest PLF is far more common than currently acknowledged? Likely because so many people are being diagnosed as something else (I was told I had Menieres, then MS and even TMJ), you’ve been told MAV and I am sure other things in the mix too.
I think people are medically managing because the surgery has such a low level of success that even the doctors are reticent to perform it. My advice would be to get yourself a referral to the ENT clinic at UCLH, they are the national centre and as soon as I walked in they said I likely had a PLF, they know what they are looking for. Do you know what set yours off? Barotrauma is the favourite Doctors are taught to look for but the USA is now saying any head trauma even seemingly mild (a blow to the ear, whiplash etc) can also cause it. Would you let me know what the inner ear surgeon says when you see him?
PLF does cause you to feel disorientated, I was subconsciously walking to the left as if I was on a ship that was heaving at sea. Tinnitus is a good sign you have a PLF when combined with other symptoms, and it happens in both ears even when the fistula is in one ear - I don’t understand how that works but it does.
I don’t know which window is affected, to be honest I was so dizzy and disorientated post surgery all I remember is the surgeon coming to see me, shaking my hand and telling me that given the size of the leak he didn’t know how I had mentally survived it for 2 1/2 years, whilst all I could think about was trying desperately not to throw up over his shoes despite the anti-sickness meds, how to win friends and influence people
I totally get what you say about flying having seemed to have lessened the symptoms! It seems to go against everything they say about it, but if you have a small leak, or one that is semi healing itself on and off, I flew around the world without any problems at all, in fact I spent 2 blissful weeks in the Maldives pre car accident and like you, was a full on tourist doing everything like a normal person. However, one journey on the underground in London and getting in a lift post car accident and the symptoms went crazy. It is obviously to do with pressure but why flying can be OK and the underground and lifts (physically painful) are not, I don’t know? But I am so pleased for you that you got some respite and enjoyed your holiday, it makes such a difference when you are free of it even for only a couple of weeks, although I am jealous you can sleep on a plane
The surgical patch burst (felt and heard it) when I sneezed week before last although it had not been stable from the beginning and I immediately went onto bed rest now I know what to do but it is steadily worsening again, so I am sure in order to try to live I will forego some hearing to not have the world spinning 24/7. The surgeon has said the leak is too large now to heal itself (very sadly) which I agree with you again is because the area is supposed to be under pressure and there must be a tipping point when the flow of fluid and pressure makes it impossible for the body to close the hole. My hearing is normal between attacks (through permanent tinnitus though) but my life is constrained to such a degree that for me, the trade off is a no brainer, although I doubt there will be another op before October/November this year.
I am no doctor but your symptoms do sound like an underlying PLF so please don’t give up searching for the right doctor and the right diagnosis, I hope that person is just around the corner for you and if you find an amazing PLF surgeon please let me know!! Thinking of you and wishing you dizzy free very soon.
Gosh, you really have had it rough …
Yeah, I think the body/ear reacts to the leak and slowly increases the pressure inside the ear until you start to get tinnitus. I didn’t have tinnitus for the first 5 months after the ‘incident’ (all i did was point a shower into my ear having lowered both the temperature and the pressure to levels I thought were negligible ). I was also only dizzy for 5 weeks, then despite the fluid appearing in my ear every morning I had no other symptoms.
I wonder if the increase in pressure is an evolved reaction to push the wound out flat a little if the initial wound pushed the membrane into the ear - this would make some sense.
Sneezing and coughing definitely made mine worse.
On the subject of people not knowing they have a PLF - it seems possible that a small one my remain asymptomatic as I can atest. I wonder also if the oval and round windows are not just dumb container membranes, but have some pressure regulation function that allows them to split open briefly or act as some way of releasing fluid into the middle ear. If you damage one of them perhaps it takes them a lot longer to return to normal function.
Yes, if you read the paper on the Japanese trial for a Perilymph test, you will note they basically find more people with PLF’s and many more with bi-lateral PLF’s (which should not exist) than they expect. I wonder how long before this test will be available in UK, US and rest of world and how long before the test is used to further research.
On the subject of Menieres I can only imagine that the vertigo attacks create a temporary PLF and release fluid into the middle ear. It’s amazing that no-one has monitored the vertigo attacks of any patient to the point where they can explain the mechanism of a vertigo attack - that to me is ENT medicines biggest failing! Some of the theories make no sense and they should get together an inter disciplinary team to work out what is going on - for example, some claim that when you have a vertigo attack one of the membranes between the epi- and perilymph fluids is broken allowing the fluids to mix. This makes no physical sense - if you have increasing peri-lymph pressure, then obviously the epi-lymph pressure would go up and the membrane would probably remain stiff trapped between two equally pressurised fluids. Maybe the membrane would move a little until all the slack was taken up but I can’t see how the membrane would break - the pressure builds up on both sides equally? unless the fluid pressure was off the charts and crushed the membrane - but there is presumably no way the body could create such high pressure??
It seems therefore totally obvious to me that one of the windows breaks during a vertigo attack as its the only interface that has much lower pressure on one side - one side is just ‘air’.
I also hypothesise that ‘fullness’ is just fluid trapped in the middle ear and /or eustachian tube - to me its obvious that when you get a mix of body fluids including blood in a tube it can get temporarily blocked - i personally get a sensation of some dried blood ‘cracking’ a few days after a bad leak that occurs when I move my jaw. I’ve only rarely had very brief feelings of fullness - generally the fluid doesn’t stick around and flows away.
One last thing - I suspect vestibular neuritis and labyrinthitis will one day turn out to be insults to the inner ear windows and temporary PLFs and have absolutely nothing to do with viruses at all! To me a physical insult to one of the inner ear membranes would be far more likely than an infection getting so far into the body. And its not the virus of any accompanying cold that’s the problem - as you point out its the physical sneezing and/or coughing that can cause or worsen a tear. My MAV was much worse after a terrible cold I had over a winter. I was able to function without meds before that cold.
I am so sorry James that all it took was pressure in your ear from the shower. I don’t know about you but there isn’t anything else in life I would go back and change if I had a time machine other than “that” moment.
You have done so much research I would love it if you firstly wrote a book and secondly headed up a research group as it seems to me barely if any real cohesive, joined up thinking is being done on how the whole system works and how best to fix a PLF when it occurs? I would help as much as I possibly could. Even listing sufferers experiences/symptoms would help as in my experience I’ve been told so many things “can’t be happening” when they have/are. If this information were to be properly collected and collated it surely must aid some decent research? I’ve had a more coherent chat with you in 2 messages than 4 previous ENT clinics!
I agree that the oval and round windows must be there to perform more of a function than the ENTs I’ve spoken to give them credit for. Agree with everything you say in the menieres paragraph and about “fullness”. I did try to say the latter to an ENT once but was basically laughed at.
As sneezing & coughing make yours worse, it again adds weight to there being a PLF. As for it being worse after a cold, that makes complete sense to me especially as the surgeon at UCLH said I was to avoid a cold at all costs whilst in the first 8 weeks post op. A cold creates greater pressure on the system as well as more sneezing & coughing, so I agree I would theorise it is this added pressure/sneezing that is causing even greater imbalance rather than the infection/virus itself.
Please carry on researching and updating me and if you start that research group count me in!
I know EXACTLY what you mean!!
It was so stupid and I mean, why aren’t people taught how delicate ears are?! You can’t even have a slight accident with water from the shower! I was in a hurry trying to clear wax from my ear so I could ‘hear’ my friends clearly over lunch! I had barely sprayed my ear for more than 2 seconds, if that because it was slightly ‘uncomfortable’ (no pain though, and no hearing impact). When the symptoms stopped after 5 weeks I was delighted and couldn’t believe it! Every single doctor I had seen didn’t see fit to refer me to a specialist and after the symptoms disappeared (within a 5 day period) I forgot about the whole incident. When it came back 5 months later I was heart broken but knew EXACTLY what it was!
So good to talk to you but so sorry we are in this boat together. Ugh!
Keep positive and believe it will eventually heal! I still have hope because I’ve read two or three recovery stories!
Meant to ask: are you on any meds now and have you had migraines? (Tina responded by PM)
Went to see surgeon today at his private practice in London (PM me if you want more details) He is convinced I have a fistula. Since I’ve been doing better and fluid in ear is decreasing, we agreed we give it one more year to heal spontaneously and then consider surgery if not healed by then. He claims to have a 75% success rate. I’ll take that. In the meantime I aim to follow all the post op guidelines to encourage healing.
He also agreed with me that a proportion of people diagnosed with MAV may actually have a fistula, so please make sure you are getting a second opinion if under ANY doubt.
Just thought I’d add theses reference to this thread in case anyone wants to see how close PLF/Hydrops symptoms are to MAV. This woman was diagnosed with a PLF and subsequently suffered the Hydrops after surgery. The description of her symptoms leaves me in little doubt there is a close relationship between Hydrops and MAV.
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There’s a preview of the book here:
Have you or any of the doctors looked into the blood patch procedure. It is a minimally invasive procedure that can be performed in a doctors office. It involves injecting blood mixed with another ingredient into the ear with a syringe i believe. A doctor based out of UC Irvine performs it.
I am on my phone and don’t have specifics unfortunately.
Wow, very interesting, thanks for the link, I will show my ENT, that’s the first time I’ve heard of that procedure. Sounds promising for emergency cases at least!
I suspect though that whilst this is may be a useful procedure for emergency acute cases, would this be strong enough to deal with any follow on Hydrops? (which I believe is where I am at now)
I was misdiagnosed when the original injury occurred. I had no hearing symptoms at the time, just balance and it was blamed on ‘a virus’ despite the obvious trauma to my ear (red flag). However, vestibular symptoms resolved within 5 weeks and at no point did I have hearing issues, even tinnitus.
The leak however, continued but interestingly didn’t cause me many symptoms, except a feeling of muffling/bubbling in my ear briefly in the morning when getting up which I now realise must be perilymph gathering in the middle ear before draining away with gravity when I get up. I will never know if leaving this to resolve on its own was a good or bad plan, as perhaps my fate was already set.
MAV/Secondary Hyrdops (I believe they are the same thing) then snuck up on me by the 5 month mark of having no symptoms. The only clue I had to this sneaking up was on a couple of occasions I was momentarily stressed and became dizzy for a few seconds. That was probably a sign of the pressure rising. I believe this was the point where the fistula had sufficiently healed that the perilymph pressure met the endolymph pressure resulting in the overall pressure in the ear rising significantly, causing the tinnitus and back pressure on the healing fistula. This pressure presumably becomes episodically high enough to occasionally breach the fistula FROM THE INSIDE and results in variable vestibular symptoms that can include big spinning attacks during a large, high pressure breach, or as small as a sensation of swaying or even a minor migraine rumble as the brain gets irritated from a tiny dribble of the stuff. Worse than usual vestibular symptoms then persist for a few days whilst the fluids ‘refill’, then settle for a while, then reach a critical point at which the fistula again breaks. This cycle could explain many people’s episodic vestibular attacks and relapses. Perhaps with any injury to the inner ear windows, this process is inevitable until the inner ear windows become scarred up enough to take the pressure at the same time as the inner ear fluids balancing out more and the overall pressure coming down. You would hope that the endolymph pressure would respond by reducing its own volume, but I’m not sure how this system works, and if there is a point where the fluids will never properly re-regulate (but then how would ANYONE get better? (and apparently they do?))
Whether the blood patch could have helped initially we’ll never know but its CLEARLY not a good thing to have a perilymph leak for months as during that time, no doubt, endolymph areas may distend and increase the risk of Secondary Hydrops. Had I known of such a risk and such procedure I might have investigated it, but only 5 weeks of acute symptoms is a very short period to get a referral, appointment, battery of scheduled tests, unless I had been treated as an emergency and seen an extremely clued up surgeon which I wasn’t - just sent home to ‘get over the virus’. I had no idea if the feeling of bubbling in my middle ear would have been enough to have any procedure done given I had no other symptoms.
Btw, now I’m only on 10mg Amitriptyline and my balance is almost perfect, with no dizziness, swaying or rocking at all. Unfortunately I still get episodes of less violent vertigo and I have constant if slowly fluctuating tinnitus. I have no doubt I will make further improvements as that has been the overall trend for the last year. My treatment has been conservative (medical only) the whole time.
So as many of you regulars know, I didn’t get this surgery and I’ve been improving significantly nonetheless.
I wanted to link this post to this thread as a warning to others, EXHAUST CONSERVATIVE THERAPY!:
Phew! What a stressful journey you’ve been going through!!! --and reading a few of the other tales, wow. I am just about to head off to Dallas TX for a visit to a neuro-otologist. ENT thinks I have a PLF due to my cholesteatoma (which I’ve had several times). What joy. Worst part is going to be the parking garage. Lol Or a VNG if they make me do that. Ugh. I got here by googling caffeine and equilibrium, so that tells you what a rabbit hole The Google is. Generally caffeine is supposed to help equilibrium, but I think the doc’s going to tell me to cut it out completely. Blah.
I’m really glad being conservative worked for you! I’m a bit leery of surgery, myself, as a veteran of several ear surgeries. However, I will need it to remove the cholesteatoma, minimally. Fun part is, I work for Amazon and am breaking all the rules of heavy lifting and whatnot. Oops.(I plan on changing this, but for right now it’s what I gots).
I skimmed through here, but I’m going to return and read all of it once my “fun” is over. Thanks for sharing!!!
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.
Best of luck with it!
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.
Out of interest, how have they come to that conclusion? The radiology or did you have surgery for this?
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.
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