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Perilymphatic Fistula


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Old 10-18-2016, 10:22 AM   #1
fugazi92
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Perilymphatic Fistula

Good morning to everyone. I was wondering if anyone on this board has any experience with this disorder. I am of the school of thought that this is what I am suffering from, but I have found (after seeing dozens of ENT's) that is a widely understudied/disputed ailment. I live in New York City and can not even find a specialist here to see. Have any of you been diagnosed with/ treated/ operated upon for this? If so, what were your levels of success? Any and all light that can be shed on this topic would be greatly appreciated. Best wishes,

-Ryan

 
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Old 01-16-2017, 05:07 PM   #2
imbalanceman
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Re: Perilymphatic Fistula

I too have had trouble with this. I since day 1 have argued this with so so so so so many so called specialists. Its been nearly 3 years now. I have been left to live with it and dismissed so many times I have tried and done everything they have asked me to do yet I never get any better. I have taken all there tests and all there meds but if you mention fistula they just say no. I am in UK. I finally managed to find a specialist who actually listens and understands and is 99% agreeing with me. So I have seen the surgeon who said he will do the operation as long as my CT cone scan does not show a Tumour or someone else will deal with it. I am just waiting now for my scan to be looked at and hopefully I will get patched up and the nightmare will end.

 
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Old 01-27-2017, 06:50 AM   #3
thekittyofcastl
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Re: Perilymphatic Fistula

Look for a doctor that treats vestibular disorders

 
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Old 03-11-2018, 11:30 AM   #4
inittowin
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Re: Perilymphatic Fistula

Yes, this is a hugely controversial diagnosis at the moment because it was felt it was seriously OVER diagnosed in the past.

I've also had a suspected PLF but have avoided surgery because it does pose risk.

I'm also nearly 3 years into ear trouble after minor trauma.

I do still cringe when doctor's tell me it can't be anything to do with my trauma, and diagnose MAV!

I have also found a great doctor and he was open to surgery, but have held off and am glad I did because I have started to get better and the symptoms have receded significantly. For example, i'm no longer dizzy! (Whoop!).

I'm not 100% and still have the sensation of leakage most mornings when getting out of bed, but it used to be every night and the leakage and aural muffling was very significant when I rose up.

The alternative diagnosis to PLF is Secondary Hydrops, which often happens, sometimes in a delayed fashion, after PLF has mostly healed.

This I can believe might be causing your symptoms and if so the operation may not be necessary. It's something to weigh up.

Remember, Hydrops from PLF can take years to settle back down so unfortunately you might have to be very patient.

 
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Old 03-11-2018, 08:12 PM   #5
imbalanceman
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Re: Perilymphatic Fistula

I did have the surgery to look for a PLF but it was negative. Turns out all my ear pain and dizziness etc was due to my neck injury. I always advised mine came on from heavy overhead lifting and scan shows 2 discs bulging and thatís after 4 years i expect it was much worse when it started but never picked up on as no one would consider my neck until my ear was fully explored.
Even now I am still suffering with that horrid off balance brain fog. Vision vertigo symptoms but not as bad but if I turn my head round to the left too much I will get that sensation I have fallen through the floor and still to this day shopping is causing me much distress and I just can not function and that can happen in an empty shop with just me in it. For some reason my vestibular system just does not work correctly. I am still being messed about by hospitals as they wonít do anything about my neck! Itís ridiculous! I went for surgery as I felt I have nothing to lose. A life of crap or the possibility my inner ear was causing this and I could be cured. I went home same day blood running all down my face out my ear but I just rested for a week and took it easy for 3 weeks after and I to this day have no ear pain from it just avoid cotton buds in your ear and water getting in for a month or so. I have young children to look after in the day and work in the evenings and I can tell you I have never had a more difficult and challenging time these past few years but feel Iím so close now to a resolution. I would advise the ENT specialists are very good at there job and if your tests are all normal then maybe another part of the body is the cause. My neck was damaged many many years ago from a nasty fall at an old workplace and only suffered daily with extreme pain in my neck and headaches. Weight training must have aggravated this further and left me how I am today. I feel for anyone who lives with this condition and understand the stress and frustration of visiting hospitals and seeing specialists time and time again and just not getting an answer. There always risks with any surgery but I donít care anymore I just donít wanna live like this. I personally had no issues after surgery and it never hurts to let them take a look they will only ever graft if they see a suspected leak. They did wake me mid op and get me to really strain hard to see if there was any fistula present but must admit the drugs were awesome I was so sleepy. After the op though you feel horrendous I could not lift my head 2cm off the pillow without feeling so sick and dizzy. Ask for a shot of stemetil that had me on my feet within an hour and probably 3 hours later after a good meal I went home and got a McDonaldís on the way home. Whatever you decide I wish you all the best this is my experience and I hope it can help in someway but honestly do not worry about having ear exploration because without it you will never know for sure. I had a great surgeon and I had 100% trust in his abilities they were an excellent team and this really helped put me at ease. Good luck.
Also if you ever had any sort of whiplash get the neck checked out. Feel free to ask me anything and I will answer best I can.

 
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Old 03-14-2018, 12:41 PM   #6
inittowin
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Re: Perilymphatic Fistula

Actually Imbalanceman, whiplash can give you a PLF and/or Secondary Hydrops, so good you had it investigated. Lack of PLF does not guarantee you have no Secondary Hydrops though ... the latter should calm down in time so you may see some spontaneous improvement if for any reason it is not your neck.

The UK olympic long jumper Greg Rutherford got Hydrops from whiplash.

Best of luck!

Last edited by inittowin; 03-14-2018 at 12:46 PM.

 
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