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    Old 01-04-2016, 06:50 AM   #1
    Junior Member
    Join Date: Jun 2015
    Location: Hampshire
    Posts: 10
    imbalanceman HB User
    not sure what is wrong

    So far I have had this nearly 2 years and so far no one out there has the skills or knowledge to give me a diagnosis. I have a constant off balance feeling all day long unless laying down. Have trouble like everyone else with supermarkets, lights and changes in envoirement . disequilibrem. It gets worse when bending over and when lifting anything heavy or putting strain on my brain. I think I got this through heavy weightlifting to begin with but agree with comments about tests just come back normal, no one really believes in PLFs and just pass you back to your GP or send you to a shrink as they think we are making this up. its crazy. I can feel when I have fluid leaking on my brain it kinda tingles for a while around the mastoid area only, I also had a picture taken of how swollen this makes my left eye after this has happened.
    I have problems with moving the eye I think the cranial nerve has been damaged by this controlling the eye muscles and in return visual vertigo. anyone else get stuff like this?

    Last edited by Administrator; 01-04-2016 at 03:59 PM.

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    Old 01-04-2016, 07:12 AM   #2
    Junior Member
    Join Date: Dec 2014
    Location: United kingdom
    Posts: 12
    Kingy1 HB User
    Re: Perilymph Fistula

    I had surgery for a suspected PLF in August 2015. Unforts I have had no improvement in my symptoms.
    I suffer will disequalibrium symptoms. 24/7 "off" feeling worse with activity and as the day goes on. I've had it nearly 2 1/2 years now and have really tried everything. I have had full vestibular testing and I also showed a significant weakness on my left side with hardly any reaction to the caloric test suggesting my left side semi circular canal (mainly lateral canal) has been severely perm damaged. My problems started after scuba diving for my job role. I was diagnosed with neurological decompression sickness and treated in a chamber as also suffered with paralysis of my upper limbs. Luckily my arm movement came back but the damage to my vestibular system remains. As specialist I saw (one of many!!) suggestion a PLF due to the pressures caused from diving and in decompression sickness...
    I've also tried numerous VRT and try to stay as active as possible. I have accepted now that this may be what I'm left with so have started to look at ways to manage the symptoms instead of "cure" them.
    Sorry for the dim outlook. If you're considering surgery def go for it as I'm so glad I did. The risk factors are low and the poss benefits are very high (get your life back!). Any questions please ask. All the very best I feel for you as it's such a horrible thing to love with and something that not many people understand xx

    Last edited by Administrator; 01-04-2016 at 04:00 PM.

    Old 01-04-2016, 03:01 PM   #3
    Junior Member
    Join Date: Jun 2015
    Location: Hampshire
    Posts: 10
    imbalanceman HB User
    Re: Perilymph Fistula

    Thanks for the quick response, im really sorry to hear you still suffer I am nearly at the 2 year marker and can not remember life before this anymore, I have improved my symptoms by being lazy. that's right, I tried continuously to stay in shape and work out through this as much as possible but found it just got worse, I read these things can heal with time and rest so that's what I have been doing, no lifting, minimal bending over ( hard with kids creating so much mess everywhere) and when ever possible just laying down on the good side of my head. I really miss the gym but getting better is more important than anything to me. I went to supermarket today within 5 mins disequillibruim ,nausea, hard to track so much going on. once I go out I was just back to normal mullered. some days I can spend hours in there but depending on how my eye is I can predict the outcome.

    Last edited by Administrator; 01-04-2016 at 04:12 PM.

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