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Secondary Hydrops, PLF and my 3rd PLF Repair


#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.