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Secondary Hydrops, PLF and my 3rd PLF Repair


#1

This is the first post I’ve made here, I have to admit that because I don’t have MAV I tend not to participate too much, however because I was misdiagnosed with everything from TMJ to BPV (even a tentative MAV) prior to being sent to the fabulous team at UCLH in London, sometimes the diagnosis we’ve been given isn’t always correct so this may help some people here which is why I am posting.

Before I start I also want to thank @turnitaround (James), we’ve had a number of long private chats through here and between us we keep researching and keep updating each other and I’ve really appreciated his support.

I have a twice visualised Perilymph Fistula on the right side. UCLH have patched it twice but it’s having none of it. Before I start raving about the wonderful Professor Saeed who heads up UCLH, if you are ever sent to Mr Kahlil there (Prof Saeed recruited him), he is brilliant too. They really understand what it is like to live with the symptoms we do, which makes a refreshing change from most GP’s and even some local ENT’s.

When I went to see Prof Saeed yesterday I was practically suicidal, I’d had enough, I felt there was no help left for my condition or it’s debilitating symptoms. I had been controlling the worst of the symptoms since second repair fail with Amitrip but I became allergic and five sets of different meds later am now allergic to all of them too.

So @turnitaround , Prof Saeed said right off the bat that because it took me so long to get referred to UCLH I now have Secondary Hydrops as well as the leaking fistula - you were right. He has all my balance tests etc so his plan of attack is to do a 3rd repair himself using a different technique, one where the “glue” is adhered to the bone all around the outside of the round window not just the membrane itself.

He is hoping that if it works, the hydrops will settle as he can’t give me meds. If it doesn’t work he is doing the ablation with gentamicin (apologies for spelling). I will need physio post that as most of my right hand balance will be wiped out. If that doesn’t work then he will sever the nerve and we begin re-training my brain to use balance information only from the left side. Drastic solutions but mine are drastic times as been dealing with the PLF a long time now and it’s not healing at all on it’s own.

I mentioned to him about the diuretics post op to reduce Perilymph production to take the pressure off the leak that @turnitaround found and he is looking into it. James, you said he was the man to see and you were right. You can tell he is the boss and he is a doer like me, so I feel so much better mentally this morning that we have a plan and he promises he won’t stop until he fixes it.

So, I have everything crossed that my body doesn’t reject the 3rd patch when the op is done (waiting for confirmation but end of July/beg of August) and that finally I will be able to get back to the love of my life, fitness training. All this can’t bend, can’t raise heart rate, can’t be anywhere with noise because it all causes an attack of vertigo that lasts hours so I can’t exercise, is as mentally challenging to me as dealing with the awful symptoms.

All I can say to you is if you don’t feel you have been given the right diagnosis, please keep pestering your doctors for referrals to the right people - it took me 4 years of insisting before I finally saw the lovely Mr Kahlil at UCLH. The symptoms for menieres, MAV and PLF’s are so close please keep going until you are sure.

Thank you James for allowing me to continue on this site because I haven’t found one for PLF’s specifically (maybe you lovely MAV people could adopt us??) and for not giving up (even when I had) and for researching like mad like me. I really appreciate your messages in my darkest hours and I’m thrilled you’re running this site now.

My apologies for any grammar/spelling errors, I’ve had CSF fluid leaking into my brain for so long my brain doesn’t work as well as it used to. Good luck to everyone on here and I hope you all find some relief very soon.


Fluid in eustacian tube
#2

Pleasure, Tina. He is a really great doctor, you are lucky to see him. There are very few who would even consider doing that operation. I wish I’d seen him soon after my trauma … everyone else at the time was completely useless, including quite a well known trauma surgeon who should have referred me immediately to ENT. It might have cut my suffering by years. I only found his contact by chance on a Menieres site a year later after a frustrating six months with an oto-neuro telling me it was migraine! (which given the obvious relationship between the dizziness and the showering into my ear was barely believable).

Please take things slowly and try to be as conservative as possible. In my experience the Hydrops is incredibly frustrating and full of relapse and exacerbation and it is very very difficult to keep up hope.

I defer to your doctor’s ultimate plan. Sounds like a good start, go for it!!


#3

I saw a professor of ENT prior to being sent to UCLH who said he had no idea what my condition was but it categorically (his words not mine) was NOT an ENT issue!! He was one of many, I was even told by an ENT i had suspected MS (the weeks of waiting for that to be confirmed as incorrect were worrying) and also had two Neurology consults both of whom told me I needed to see a Psychiatrist because it was making it all up!! My issue with all that is NONE of those doctors will be given my correct diagnosis so that they know when confronted with the same symptoms again with another patient that there is an underlying, very real issue. Until we start updating these doctors giving the wrong diagnosis, nothing will change.


#4

That’s just awful.

The discipline is desperately in need of better objective testing and diagnostics for what is probably a lot more common that people give it credit.

I asked the prof if people with Secondary Hydrops might be out there who have been told they have MAV … he said ‘undoubtedly, because they share the same symptoms’.


#5

I found a research paper done by a Californian University where they wanted to see just how common a PLF really was. So they asked their local morgue for 130 random cadavers (I am sure some of those people would have been complaining of Migraine/Vertigo symptoms during their life) and over 40% showed signs of a PLF leak - that is not such a small percentage to make it a “rare” condition is it?


#6

No, although one caveat: there is a possibility the Hydrops is what keeps the PLF from healing … so you have to ask what is that person’s issue ultimately, Hydrops or PLF?

At the very least medicine needs to come up with a conservative way of reducing the Hydrops effectively. I wonder if at least one drug is in plain sight? Propanolol?

This might be the real mechanism that underpins its success in ‘MAV’ …


#7

I don’t think there is very much real research going on for either condition is there? Menieres seems to be getting more - have you come across Prof Rea in Leicester? I spoke to him via email on Monday and he seems really on the ball about PLFs but is conducting a number of trials for Menieres sadly though he only has a private practice. The Menieres society seems to have got their act together and have got drug companies on board and have upped their game - perhaps that is what it takes to start a revolution. Do you fancy starting the MAV/PLF society? :wink:


#8

Hahah … well I think mvertigo is the modern embodiment of such an organisation :slight_smile:

This site is basically for all chronic dizzies with migraine, however that comes about. :slight_smile:

Tina, I may drop Prof Rea a line … this whole debacle has been bugging me for some time.

Out of interest, what is he/she trialing?


#9

Yep for sure - but we need to start protesting, petitioning drug companies, getting press stories and getting loud! Not easy to be all those things when the world is spinning 24/7 though. Perhaps it would also help other people understand what we’re going through and make it a far less lonely journey to endure. If I hadn’t found you I’d have been lost.


#10

Go fot it - he was in the dailymail on Tuesday for a condition I’d never heard of so he is good at PR. It says on his resume that he is running 2 drug trials for menieres which I think includes the steroid injections - one on behalf of drug companies and one on behalf of menieres society in the UK. Do you want his secretary’s email address? I will PM it to you.


#11

Ah, yes. Btw Gentamicin is apparently officially not being recommended anymore in UK … please ask the prof about that … the (not so) new kid on the block is steroids. Yes please (email).


#12

I did ask Prof Rea about that as I’d found the same research as you and he said it is, but (there is always a but eh?) only for Menieres because it preserves the inner ear, not obliterate it and for PLF’s you want to kill the inner ear. So I wasn’t surprised when Prof Saeed said gentamicin not steroids.


#13

Stay conservative … sometimes you have to get the docs to slow a little :slight_smile:

btw, Tina, i have to thank you for the chats too, because it was our discussions about PLF which helped encourage me to follow the post op guidelines on their own to see if they promoted healing.

On the evidence of the last 6 months i have to agree that they do.

In other words the post op guidelines for PLF repair recovery ON THEIR OWN WITHOUT THE OP can help loads, imho.

What is really amazing is there is no scientific study that documents the natural history of Secondary Hydrops. Its 2018 for goodness sake!!

So if you are given a diagnosis of Secondary Hydrops, some doctors will tell you a prognosis based on their personal professional experience, but there is no consensus!


#14

I’m glad I could help. I debated whether or not to make this post as I don’t have MAV but as you and I both know from our research, you never know where the spark to help you is going to be found.

I think what I’ve learned from doctors through this is - choose your doctors wisely, choose which ones to believe and which ones to just walk away from and listen to your own intuition. Our bodies KNOW what is wrong with us and I think they give us clues how to help it, it is working out the clues and getting to see the right doctors then that is the challenge.

I’m telling you - start the MAV/PLF Society, I will back you all the way and we’ll use our spare time from all this enforced rest to create a buzz. :smiley:

Prof Saeed is hoping the 3rd repair using new technique will work (as do I, lord knows I follow all the post op guidelines to the letter) but he could see I needed to know there was hope beyond that if it didn’t. I liked him and I trust him so got a good feeling about 3rd repair. Crappy though the post op bit is.


#15

I asked him why he was so convinced by his technique … .he said “well they never come back!”

LOL!! TRUE STORY

btw, please read this Topic - someone who had PLF (and probably hydrops) who also healed without a patch.


#16

Good luck Tina. It pains me to just hear your story. Wishing you good luck with the surgery. You are lucky to have James as he knows more about PLF, hydrops, CSF than most other folks do.

Gentamicin is an extreme step, do not go there unless you have tried every other thing possible.


#17

Thank you. I have the date for 3rd PLF Repair now in July and Prof Saeed is going to patch both windows on that side to be sure, so have everything crossed a 3rd repair will do the trick cos my body isn’t doing it on it’s own and because I’m autoimmune it actually now sees the patch as something else to attack and remove. Am off to read James links now :slight_smile: Take care all


#18

I’d like to share my story. *Turnitaround, I really like what you’ve been posting regarding PLF and I would love to speak with you one of these days as I feel it is important for The PLF community to speak out and connect.

I have been living it for a couple years now and it has tested me more than anything in my life. I did have one procedure from a reputable doc in the states. I do deal with CSF leak which causes stiff neck, headaches and other symptoms. I failed my initial graft, which was heartbreaking because I’ve been even more symptomatic since. As others have mentioned in these forums, I too have some good days where I can enjoy a walk with the dog and doing errands etc. But I also have days that I suffer terribly and cannot do anything.

Exercise of any kind certainly punishes me and I suffer from it for days. I have used white flower oil that you can buy on amazon, which really helps alleviate my headaches and it is much more natural than taking drugs so I highly recommend it. It’s not a fix by any means but I always have it in my pocket and it helps. Sometimes it feels like my nose is going to run but it doesn’t. It just lingers in my nasal cavity. I do have tinnitus in both ears but only since I failed my graft. My hearing goes in and out sometimes. I am extremely sensitive to barometric pressure change. I do feel the fluid ooze into my middle ear quite regularly and regularly feel a wet middle ear space. During a low pressure drop from a weather front, nimodipine (a calcium channel blocker) helps reduce symptoms.

It is difficult because I try to hold onto hope. On my good symptom free days, I’m so happy. And on my bad days I tend to lose hope.

I do wish I had held off from the operation, but it also provided needed validation because my job required me to be physical. So it was a catch-22.

There is obviously a lot more to this story as I’m sure anyone who has gone through this can understand… but I could certainly use some support and feel it would be good to share information.


#19

Morning everyone, firstly my apologies to James @turnitaround for not replying to latest PM’s but had a cancellation date for 3rd repair and took it, so now on the inevitable bed rest.

@divebum Adam, I am so sorry to hear what you’ve been through and I can totally relate to all of it, from the headaches and neck pain, through to the isolating effects of a PLF. James will tell you how low I have been at times through this journey and he has been a rock, and he said don’t give up or lose hope and he’s right.

I am so very lucky to be living in UK, we all moan about the NHS here at times and 5 local ENTs misdiagnosed me over 4 years but once you get to one of our specialist centres as I now have, they are amazing. James has met my consultant Prof Saeed who is the man in charge of the entire ENT unit at UCLH in London and I am thankful for him. My 3rd repair showed I also had a leak in the oval window on the right. They had previously patched a large leak in the round window twice. As it turned out, the 2nd round window patch had held but he poured liquid bone cement over it (which set hard as he watched it), to make sure. He could not do that with the oval window because of what is nearby to it so he patched it. It’s been the hardest and most painful recovery so far but he is quietly confident.

I will let you all know how it progresses. For you though Adam, have you tried having a grommet fitted? It certainly helped me as it lessened and shortened the severity of vertigo attacks. It isn’t a permanent fix but may make it a little more bearable.

What I would like to share with you all, mostly to highlight the prejudice that we PLF’ers face from the uneducated medical community at large, is what happened to me 6 weeks ago. My PLF was caused by a car accident (confirmed by Prof Saeed when he did 3rd repair as oval window can only burst through ‘something like a car accident ‘) and I was forced to see a psychiatrist to assess how the PLF has impacted my life and mental state.

This psychiatrist had no idea what a PLF is and couldn’t even be bothered to be professional enough to research it. He concluded I was making a big deal over nothing (sorry for crap grammar), that I was obsessed with the PLF and basically made me feel even more of a failure than living with the PLF for 4 years already had. There is a big thing here in the UK about mental health at the moment yet he made me feel betrayed that I had opened up to him (which I find very hard to do with people I don’t know anyway) and trusted him with just how mentally disabling the PLF is. This man, a so called professional was so scathing of me, I sat with a bottle of pills and vodka and just wanted to stop the world. James doesn’t know this but it was during this moment I sent him a message that was actually a veiled goodbye, and it was him and someone else close to me who ensured I did not take the pills that day a few weeks back.

I am so sick of doctors who know nothing about it, judging me and telling me I am a failure for not coping, or insinuating I have munchausens (apologies for spelling) or something similar and I just need the attention. I am SOOO not like that, I ran my own businesses before this, I went round the world twice alone and had a great time, everyone left who knows me will tell you how independent I am.

It is time we PLF’ers got together and started petitioning for better treatments, better understanding and better help. This is a completely disabling condition, without balance once has nothing. We deserve WAY better, just because this is an unusual condition (although James and I believe it is more widespread but often wrongly diagnosed because an op is the only way to truly tell), should not mean we become 3rd class citizens.

What I would say Adam, is we may all have times when we are down, James and I both have, but we keep each other going through here, so anytime you feel it’s too difficult, you shout us. We’ve been there and you are not alone.
Take care
Tina x


#20

Tina,

Thank you very much for a prompt response. I don’t yet know how to private message or recommend a connection. It would be great to FaceTime or chat somehow. I’m certainly in need of some friends who “get it”. I’m a pretty young guy (32) and this has completely changed my life.

I battle with the idea of having another try to repair. On the tolerable days I avoide the idea of it completely and on the bad days I become so desperate I’d do it.

However, the surgeries have such a poor rate of success and considering how easily my first graft failed, I certainly wonder if I’d just be making myself worse since the first attempt is something I now wish I could take back. My injuries are bilateral, but my right side is worse. I have seen a few different highly qualified Neuro-otologists all over the east coast. One even told me flat out that the grafts don’t work.

I can feel the loose remaining graft which seems to be partially attached. I can’t iterate enough that I do get some manageable days though, which I feel blessed to still have at times because although there is discomfort still, I’ve had long durations post my first procedure that I was completely disabled for a long time and it took a great deal of time to get to where I’m at today, even though still worse than I was prior to my operation.

I was pretty much mostly at secondary hydros prior to my operation. And what I can tell you is how much I actually miss those days.

I believe James’ comment was spot on— that people with PLF where the PLf heals a lot, can lead to the secondary hydro ops stage and I feel people should be as patient as possible to see if maybe with diuretics and time that it could maybe fully resolve.

Like I’d mentioned earlier, I was between a rock and a hard place to validate what was going on to keep my career. My surgeon informed me that if the graft failed, I’d likely return back to how I was. Well that isn’t completely what happened. I am certainly worse but maybe because the graft’s failure causes damage.

He has stood by me however in writing me a formal letter to give to my employer that will help me.

We spent a great deal of time trying to find a very experienced and reputable surgeon which is why I don’t beat myself up too badly on our decision (my girlfriend and I).

I also agree that PLF is more prevalent that people think and it is frequently misdiagnosed. I am also on the perilymph Fistula Facebook support group btw. I too have dealt with doctors who know nothing about it and barely know anything about the vestibular system. Certain things have helped me though. Doing a road trip with my girlfriend and getting away from doctors helped me escape the lifestyle of a vestibular patient a bit, even though I still battled symptoms, it was a good thing for me. I even got a new car to make road trips more comfortable. We got a puppy, which although can be an additional stressor, it was a good stressor and a good distraction from things— I certainly rely on my girlfriend’s help to raise it though.

Going for walks and trying to appreciate what I have is what I try to do. But I certainly struggle and am scared of what the future holds for me. If I could reach consistent managable days I would be in heaven.

I dream of being able to fly again… I haven’t in a couple years and hearing some others post about how flying hadn’t caused them major issues was very uplifting… however the last times
I flew I did have issues and that was only when one of my two ears was compromised. I have not flown since the other side was injured. I am quite certain that I would get vertigo and my surgeons have advised I do not fly…

Thank you again for this support group as living with this condition is extremely isolating. It helps knowing I have people I can talk to, but I also do think I could use talking through a phone at some point to others like me.