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Secondary Hydrops, PLF and my 3rd PLF Repair


#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.


#21

Hey Adam, welcome to the board.

Your story sounds familiar for someone who got chronic dizziness through injury.

Can you tell us more about what happened to you originally?

Did you get tinnitus immediately or did that come on later?

Did you get any other diagnoses? I was diagnosed with MAV originally.

If you’ve ‘only’ been suffering for two years I can definitely offer hope that things slowly improve and I’m soooo much better after 3.5 years since my original trauma, without having had any surgical procedure: I’m no longer dizzy or imbalanced. I managed to give up meds at 2.5 years point but it was a struggle for about 6 months after. Definitely worth it. What do you take?

Lifting heavy objects makes me relapse, so definitely would not advise straining. Flying for me is fine though it appears.


#22

Hi Adam

Living with a PLF is scary and takes away any kind of firm foundation on which to build your life and move forwards. It makes planning anything in advance nigh on impossible and @turnitaround James will tell you how frustrated I too am that I cannot get on a plane and jet off somewhere too.

I am in the strict bed rest stage post op at the moment and not really supposed to be talking but once I’m past 8 weeks perhaps James could find a way for us all to chat? He and I have spoken before about working to raise awareness etc too.

In terms of everyday living, did your doctors tell you what to avoid? As James said, no heavy lifting, also no bending forwards, getting in lifts or the underground. I have to avoid certain noises too. Keep alcolohol and caffeine to a minimum and reduce your salt intake (James can tell you more). I also have to avoid stress and cannot exercise except for walking (being a former fitness trainer who owned gyms this bit kills me!). All of this certainly helps to control/lessen attacks.

Finding coping mechanisms is essential. I meditate and my sister is a reiki master who gives me reiki and both these help immensely. I also ‘time’ my attacks, telling myself it does pass, it isn’t permanent I just have to keep counting. The puppy is a fab way to help you, my dogs have been a life saver. What’s the breed of your pup?

I can understand why you are beating yourself up a bit about the op not working and it is a tough decision whether to try again. I personally think a PLFs ability to heal itself depends upon the size of the leak, over a certain size I think the fluid pressure is too great and apparently oval window leaks do not self heal according to the prof, even if you go straight to bed rest at the time of the burst of window.

I know surgical repairs have a low success rate which is why I insisted that if they were going in a third time, they had to do a different type of repair - I’ll keep you posted on how well the bone cement worked. I’ve also learned it can take up to a year post op to fully find it’s settling point. The quality of the surgeon is critical too. And I too could feel the broken patch ‘flapping’ around in my inner ear.

The good thing is we share info through here and James has researched loads, so now I go into appointments and the surgeon says to me I know as much about PLFs as they do!

We are dealing with something very disabling, in someways as disabling as if we’d been left in a wheelchair but because we look normal on the outside, people aren’t as sympathetic. And we have to remember we are doing it without much medical/outside help/support/understanding, so all things considered we’re doing amazingly well!

We keep going until a better treatment comes along and it will. We may not get back 100 percent of our previous life but if we can get to 80 or 90 percent then we still have a result. And we share what we find out.

This condition affects every aspect of your life, physical, mental, financial, social and relationships and one day the world will realise just how mentally strong we all were to survive it and survive it and thrive post it, we all will. It may not be today, or this year but it WILL happen.

One day we will all get on a plane and meet up somewhere nice (and warm lol) and toast ourselves for supporting each other through it.
Take care
T


#23

Tina,

Your message means so much to me. You have a tremendous amount of courage. We have a 7-month old Doberman puppy.

I used to be a hockey player, world traveler, yoga enthusiast, runner, and very avid scuba diver. Exercise to me was more like a well practiced and disciplined religion.

It is a miracle my girlfriend has stuck with me this long and we’ve been together more than 6 years. It has certainly tested our relationship, but we’re still together.

I don’t usually get vertigo unless there is a major barometric pressure shift. But I do get vertigo when I sleep, like someone is shaking me or like I’m jostled violently one way, which is very startling and literally torment. Also since my surgery failed my tinnitus has been pretty miserable. At times it will die down. But when it’s bad like it was last night, I can’t even sleep with a fan running nearby. One sort of freaky thing I noticed after the surgery was if wind was blowing on my face or I had a fan blowing air towards my nose, If i’d Swallow, for the instant the eustation tube would open, I could hear the sound of wind rush into my bad ear like someone for an instant blew wind directly into your ear. That to me has been a pretty big indicator that there is an opening, but I haven’t really hear of other people mentioning a symptom like that.

It is also very kind of you to keep us updated on your progress. I have felt somewhat bad in the past for not sharing my story more. Mostly because I wanted to be a success story that could give others hope. But I’m now realizing that for better or worse, it is important to have these stories told.

What is crazy about this injury is had I met someone like me with this injury years ago, I wouldn’t believe it myself… so to say the least Ive been very humbled and am much more compassionate towards others these days. On days that I feel good, I cherish them so much.

And btw James’ research is truly impressive and inspiring. I’d love for more websites to pop up that offer vestibular patients solid information so that they are better informed— particularly on when to approach an operation and when to hold off… and how to look for the best surgeons if that is the decision taken.

I wish I could take back my first operation, hell, I wish I could have avoided the injuries all together. I am doing my best to acknowledge I injured myself doing the things I loved doing and I’m trying to still believe there is hope.

Thank you for your optimism.

-Adam


#24

Do I take it you got a PLF scuba diving? An ex of mine was a scuba teacher (meant for great hols in the Maldives lol) and it affected his ears although not a full PLF.

Dobermans are fab dogs and they are the best company on bad days cos they don’t judge. Right, you, me and James are (were but soon to be again) high achievers, I bet there wasn’t any hurdle in life you didn’t think could be overcome by sheer determination and hard work? That even the crappiest stuff hadn’t kept you down for long? One of the hardest things emotionally when dealing with a PLF, is the moment of realisation that sheer brute force and strength of will not overcome it, that it seems to have a life of its own you have no power to control. The thing to remember is that doesn’t make us a failure. Once we can accept that our natural nature to achieve and overcome is actually working against us with a PLF, we can start to realise there is always more than one way forward, we have to keep trying new things until we find it. We are a success simply for having got this far!!

Now, I know exactly how frightening being raised from sleep with a vertigo attack is, but there are a couple of things you can do to help yourself. Raise the head end of your bed so it is higher than your feet. James slept in a recliner chair for a while and that helped him. I’m having to sleep upright at the moment post op and I use a travel pillow to keep my head still - this could help relieve night vertigo for you too. Nothing to lose by trying and if those things don’t work for you, you keep researching and trying things until you find one that does.

If you have a PLF in both ears, then when you lie on your side with your head at equal height or lower than your feet, that is maximum pressure on the leak, when you lie either side. So by keeping your head above your feet and in a central position you have less pressure on the fistula in either ear.

Next tinnitus, have you got to the ‘want to take a screw driver and shove it in your ear’ stage yet? I certainly did. What helped me was a good friend of mine is a fab nutritionist and he researched for me and said a supplement had been shown to help. The supplement itself is really expensive so I broke it down and bought the combo individually and took them for 3 months and combined with grommet my tinnitus dropped by at least 50 percent. Back now though cos of op but hey, will try supplements again when i’m past 6 weeks and hopefully they will do the trick again.

@turnitaround can you remember the names of the supplements for tinnitus I sent you earlier this year? My brain is still a bit fuddled from anaesthetic.

And we are a work in progress on our way to being a success story, PLFs force us to cultivate the patience gene, very difficult if like me you were born without that particular gene and thought life was meant to be non stop 1,000 mph 24/7! :wink: PLFs are not a straight line to recovery but we keep learning and we keep trying different things until we find what works for us.

You still have your amazing girlfriend and you will have figured out your true friends by now on this PLF road, those are priceless. I know you must be missing all your sport and travel like crazy, for people like us it’s the worst kind of prison cell but you make plans Adam. You draw up all the bucket list travel itineraries you are going to do WHEN you get the PLF healed and you send out those powerful messages to the universe. You research all the ways you can exercise when you get your PLF healed and you believe it because it’s only a matter of time.

You did yoga, so start meditating again and use the universal energy. Find a great reiki master and get some reiki, it’s been invaluable for me. Do all the yoga poses you can that don’t involve bending down.

We are all going to be that success story hun, we will find the way and every little thing we find to reduce symptoms along the way is a bonus. Let me know how you get on trying out all the things we’ve found useful so far. Some will work for you, some won’t and some you may need to tweak to make them work for you, but you take all that old exercise regime determination you remember and use it in a new way, a test and evaluate way where there is no failure only feedback.

I know you can do it cos we’re so alike us three, and we we keep each other going on the days we’re doing it tough.
T


#25

Lipoflavonoid, apparently? Available here:

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“Lipo Flavonoid” for Tinnitus
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#26

Hello all

I wanted to update this thread because I am hoping I finally see light at the end of the tunnel! It’s been a rocky recovery since 3rd Patch repair, I just said to @turnitaround I caught a cold 2 weeks ago which is a big no-no so close to a repair and things definitely went backwards.

However, the last week things appear (am always cautious with a repair recovery and there is still a way to go until I’m “safe”) to be going in the right direction. If it carries on like this I may have to hail Prof Saeed at UCLH London a miracle worker. I will never be able to bend forwards or lift anything heavy but I am losing the constant disorientation. I have lost total hearing on the repair side but if it carries on like this it will be worth it. Sound is still an issue but it’s lessening. I finally may be able to get back into the world and live a near normal life again! I should have a grommet fitted early next year so that should improve things again and then I can (drum roll) get on a plane again and travel!!

I will keep you all posted but right now, it looks like the team at UCLH have cracked it.
Take care all
Tx


#27

Welcome back dizzylife!

So glad you are coping ok post op.

Wowsers!!! This happened to another PLF repair patient on the board - did the prof say if this will recover? I have heard that it can take 6 months for hearing to return to pre-op levels.

@T_T you may be interested in this.


#28

I don’t know yet but even if it doesn’t, given just how bad the vertigo attacks were, it’s a price worth paying for normal balance and no attacks. I may have to start The Prof Appreciation Society :wink:


#29

Thanks for sharing this!

@dizzylife which doctor was this who performed the surgery?


#30

Good morning!

I’ve had 3 repair surgeries with the fabulous team at UCLH Royal Nose Throat and Ear Hospital at Grays Inn Road. 2 with the lovely Mr Kahlil and the last with the fabulous Prof Saeed who runs the entire department and who recruited and trained Mr Kahlil. What these 2 guys don’t know about PLFs isn’t worth knowing. All the staff there are wonderful, the nurses on the wards are so caring pre and post ops and Mr Kahlil and Prof Saeed’s secretary is so lovely I bought her chocolates to say thank you for all her help. Prof Saeed could see how badly the PLF was affecting my life and he said he wouldn’t quit with treatments until he fixed it, one way or another and that was just what I needed to hear after 4 years of torture with it.

There is a long wait to see them (although Prof Saeed does have a private list out of Harley Street) but it is worth it. @turnitaround has also seen Prof Saeed. You will need a referral from a local ENT to see them on the NHS. Yes I have lost hearing in that ear but they warned me I could and it is a price worth paying, at least it is for me obviously everyone has to make their own choice about that. @turnitaround said hearing can sometimes return, so hopefully it will, if not I have another ear! I haven’t seen your post @T_T but if you are in the UK and struggling with a PLF then this team in London is the place to be, I wish I’d found them sooner. I hope they help, please let me know how you get on and I wish you relief from PLFs very soon.