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Chronic ETD-Maybe another tube?

Posted , 5 users are following.

tangolady
tangolady

Hi, new here.  Nice to know there are people who know how miserable this is.  I've had this problem, right ear only, since about 2005.  Did the steroids, nasal sprays...finally had a tube inserted in 2012 which lasted until 2016 followed by a second tube. I know repeated tubes will cause scar tissue.  I was wondering how many tubes anyone here has had?  My ENT doesn't want to repeat it now and thinks the meds will work, but they never have.  He is my third ENT due to insurance changes. I'd consider a third tube until maybe the balloon surgery is perfected. Tx for reading. 

0 likes, 8 replies

8 Replies

  • anne05078
    anne05078 tangolady

    Posted

    Hello there,  My ENT consultant won't use either of those methods, as they are not

    a permanent solution.  You're not wrong when you say how miserable ETD is.  I've

    suffered for thirty years, with it resulting in Bacterial Meningitis.  The bacteria from

    the Eustachian tubes crossed the blood/brain barrier and that did it.  Seriously ill

    and almost died.and find it hard to believe all these years on I'm still suffering.

    Fortunately, I live in England and beING looked after really well sinCe my illness,

    seeing my ENT consultant twice yearly.  Mine WAS so bad last April that I

    was put on a 20 day reducing course of Prednisolone tablets.  Then Flixonase

    Nasule Drops (don't think these drops are available in all countries) These drops

    should only be used for a period of six weeks, then revert onto same name, but a spray.

    Sadly, the spray no longer works for me....probably now immune to it and just not

    strong enough.  However, I now only use the Nasule drops when my ears get

    blocked up which is approx every 4/5 days.  I then use the drops, pop my ear and

    they remain clear for another 4/5 days.

    I suffer Sinusitis, Rhinitis and Allergies, so I'm pretty sure these conditions cause

    the ETD.

    I've also suffered several perorations in my left eardrum over the years, so I'd also

    have scarring.

    I do hope you manage to get sorted and find a permanent cure to this extremely

    debilitating condition.

    Anne

    • megan117
      megan117 anne05078

      Posted

      Gee anne05078

      Would you happen to be a distributor of Nasule drops or Fixonase because you are quick to mention the same exact same thing to every ETD discussion that comes up? This discussion is not set up to promote whatever you may be selling, and I think the site should suspend your replies to discussions.

    • anne05078
      anne05078 megan117

      Posted

      Hello Megan,

      Of course I'm not. a distributor.  All I'm trying to do is help

      people who suffer Eustachian Tube Dysfunction.

      I must say, I wish new people were able to find other

      peoples messages without me keep having to repeat

      myself.  These Nasules can only be obtained by a 

      prescription from their doctor.

      I find your comment quite insulting and had the Patient

      website thought I was doing something wrong I'm sure

      they'd have contacted me.

      Because I've suffered this condition for so many years

      ( you've probably read and tired of reading my posts)

      the reason I keep repeating how good these drops

      are because they've helped me so much.

      I'm so happy with all replies when someone has 

      managed to find something that's helped them.

      I cannot believe what a nasty comment you've written.

      HAVE YOU ANY SUGGESTION WHAT MIGHT

      HELP THOSE SUFFERING THIS AWFUL CONDITION ????

      As I've said if someone new comes on the Forum and they

      haven't seen my posts and they live in England they may

      be prescribed it.  One person I've become extremely

      friendly with, that used to be on the Forum, ask their

      doctor for the nasules and they have help her too.

      Just skip over my messages if you don't like them, or

      keep off the Forum yourself.

      Anne

      These Flixonase Nasule Drops i know aren't available

      in the US as I've already ask my nephew who is a

      pharmacist out there

    • tangolady
      tangolady anne05078

      Posted

      Anne, Thank you for your response. I'm curious why you haven't had the balloon treatment? I guess if the drops work tho maybe its not worth the risk.  Anyway, hope you're feeling well.

      ?tangolady

    • anne05078
      anne05078 tangolady

      Posted

      Thank you,

      I think my ENT consultant feels as I have an ongoing problem with sinus and

      allergy issues those procedures wouldn't help me.

      Are you new to the Forum ?  I had a pretty nasty comment from a woman

      called Megan yesterday in response to my posts that I keep repeating about

      how good the Flixonase Nasules are and how much they've helped me and

      suggesting they may help others too if they're able to get them prescribed.

      She inferred I was a distributor of these nasules.  What a nasty comment,

      as all my intention was is to try and help anyone else suffering this awful

      condition.  

      The reason I keep repeating my story is for new people that come onto

      the Forum in case they don't scroll and find everyone's posts.

      So, I've decided I'm now coming off the Forum, as I don't need nasty and extremely

      rude comments.

      I'll hope that future new people to the Forum will look back and read

      mine and others post to potentially find some help.

      I sincerely hope you too find relief from ETD

      Anne 

       

    • catherine889
      catherine889 anne05078

      Posted

      Oh Anne, you’ve always been really supportive, I too did have flixonase and used it in my neilmed sinus wash, I’ve since been moved onto avanti I think it’s called but I’ve found the cold weather has made my rhinitis worse and my nose has started bleeding a little again

      Ignore comments like that, you are valued on here 

      Catherine 

    • anne05078
      anne05078 catherine889

      Posted

      Good morning Catherine,

      Thank you for that comment, that has made me feel better.

      Not very nice of Megan to comment like that when all I want

      to do is try and do my best and help people from my own

      experience.

      I certainly wouldn't want to make money from peoples suffering.

      You're always going to get one that has to be nasty !!!

      Those NeilMed Sinus Rinses don't seem to help me. But 

      may ask, is it wise to put anything other than the packets

      provided with the bottle.  Flixonase are steroid and should

      only be used from their own bottles. You may have ended 

      up having too much.  My friend didn't read the leaflet for

      the Nasules and used to administer a whole nasule into

      one nostril, each Nasule should be divided equally between

      nostrl.

      Steroid sprays and the drops do sometimes make my nose

      bleed too.  And the Nasules if used too long can cause a

      whole in the septom, like it did with my friends nose.

      Like I've said, I'm now only having to use the Nasules about

      every 4 to 5 or even 6 days and only when my eustachian tubes

      block up.  Once used after about 15 minutes I manage to pop

      my ears and they remain good for another 5 days.  I will be

      speaking to my ENT consultant on my next appointment in 

      February and see what he thinks how I'm using them.  I must

      suffer a lot of inflammation due to sinuses and allergies, but

      the Nasules have worked for me, even keeping my smell and

      taste, which is great, I'll be able to taste my Christmas dinner

      this year.

      I'm sure we've messaged before Catherine, are you in England ?

      Thank you again for your nice message of support, so much

      appreciated.

      Kind regards

      Anne

       

    • Moonwitch1
      Moonwitch1 anne05078

      Posted

      Take no notice Anne,that remark from Megan was very uncalled for. Everyone else knows you are offering helpful advice 
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