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PE tubes or scan first?

Posted , 6 users are following.

Anboyer04
Anboyer04

Hi- about 5 months ago my left ear started feeling "clogged" ... it was off and on for a while, but the past month and a half it has been a consistent thing. I went to the walk in clinic about a month ago (after it was clogged for a solid 2weeks). They gave me a steroid injection as well as a week of oral steroids and flonase. After some research I understood why they prescribed what they did, but I never have allergy/sinus/congestion/drainage issues. So, i wasn't very confident the treatment wld be beneficial- and it wasn't. So last week I saw an ENT - they did some testing and determined i have negative pressure and my ear drum is retracted. He wanted to try one more week of steroids (which I just took the last of today)- and stated that if it still didn't help then he wants to place a tube in my ear. I don't really have any issues with it- other than the fact that it doesn't seem like an inflammed, swollen eustachian tube related to mucous/drainage/irritation (because I literally can remember once or twice i have dealt wth sinus/drainage/congestion stuff (im 36 btw).

The steroids have actually just seemed to make things feel worse (im assuming because of their propeties that increase icp or something)-

Anyway- my question is- do u recommend i get the tubes (as a next step treatment) or is it reasonable to think a scan or something wld be beneficial first to rule out the rare polyp/tumor possibility?

0 likes, 22 replies

22 Replies

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  • phixion
    phixion Anboyer04

    Posted

    Personally, I would want confirmation before having tubes.

    You can get complications from tubes.

    • phixion
      phixion Anboyer04

      Posted

      I've been suffering with PET for 4 years now and I was initially given a balloon device to blow with my nose because my doctor thought my ET was just congested.

      I'm almost certain that made my symptoms worse.

      Tubes can be fine, but they can also cause infections and some never heal properly. I'd only do it as a last resort, but that's just me.

  • chantale82382
    chantale82382 Anboyer04

    Posted

    Hi!

    I have an ETD since february (ears clogged, fullness sensation etc) and 2 months ago my ENT put a tube in my left ear. It hasn't improved my condition, I think it's even worse. I'm going crazy with that... appointment with my ENT in September. Unfortunately, tubes didn't work for me.

    • JeanJL
      JeanJL chantale82382

      Posted

      chantale & anboyer,

      Please remember this - whichever ENT doctor told you to put a ear tube, please DO NOT go see them again!!! I had the same experience that chantale described, meaning - Ear Tube DO NOT work unless you have "standing water" behind the back of your ear.

      chantale, i would recommend take it out rightaway. I'm still in search of ETD 100% cure as well, but usually sinus and inflammation and jaws need to be looked into before ETD is cured 100%

      HTH.

    • Anboyer04
      Anboyer04 JeanJL

      Posted

      i cant thank you enough for the warning... my husband and i talked it over last night and have determined i need a second opinion- thank u all so much for taking the time to help!!

  • Anboyer04
    Anboyer04

    Posted

    hmmm- thank u- i may not jump right into this then... i appreciate ur help

  • phixion
    phixion Anboyer04

    Posted

    I can only see tubes working if you have an actual blockage in the Eustachian tube.

    I know some people complain of a fullness feeling with PET, but for me it feels like my ET is clear but just stuck open, causing autophony.

    I get PET every day but working out can bring it on immediately due to heavy breathing.

    I don't see how a tube would fix that issue.

  • michael11955
    michael11955 Anboyer04

    Posted

    Hi anboyer.My experience is similar to your own.Once they find that there is no malignancy there,they really don't have any answer of how to cure it.The best they seem to offer is----try this,try that.I never read the package leaflets of what the tablets are supposed to achieve because I don't want to look for things that I don't have problems with.I have though with the last tablets I've been issued with & looking at what they are supposed to help with are.

    Epliepsy,Seizures,diabetes,shingles,.None of which thankfully I don't suffer from.

    The downside is the side effects that can occur while taking the tablets.So NO THANKS

    • Anboyer04
      Anboyer04 michael11955

      Posted

      i guess my biggest concern is their lack of concern that there is something else (malignancy.... or even a benign something).... thinking i shld push for a little more testing before we jump straight to a tube

      thanks for ur help

    • phixion
      phixion Anboyer04

      Posted

      If it makes you feel any better, it's extremely unlikely to be a malignant growth in the ear, most of the time there's either nothing or it's benign.

      I was offered a scan and didn't go for it, I was also offered injections and didn't go for it. My plan was to wait it out and hope it fixed itself.

    • michael11955
      michael11955 Anboyer04

      Posted

      Are you in the U.K..If so don't waste your time. I've seen 4 ENT specialists & the best they've come up with is "Err it might be this " or it could be that".I can't be sure".And best of all "give it a few weeks & see how it goes".That has been going on for three years.I'm happy to go privately & pay,but I'm advised by my GP not to waste my hard earned money because if it can't be seen on an Xray or MRI then it must all be in my mind & doesn't really exist.

    • Anboyer04
      Anboyer04 michael11955

      Posted

      im in the US... i am afraid thats what im going to be told... i ended up in the Er yesterday - CT scan was normal... theres no way i can just accept it and live like this- its so miserable.

      i really hate u have not gotten answers- for what its worth, i 100% believe what ur suffering is real and i pray it gets better!

      thank you for responding!!!

    • phixion
      phixion michael11955

      Posted

      I am in the UK, the ENT specialist that saw me didn't come up with PET/ETD until I mentioned it.

      She checked my ET and said it looked fine from what she could see, but she did say it could be patulous or stuck open in the tube itself or towards the opening of the ET in the ear.

      She offered to pack my ear with a type of glue to stop TTTS symptoms, but I declined... I didn't particularly want to be near deaf in 1 ear just to stop TTTS every now and then.

      I think most doctors just put it down to congestion and prescribe a nasal balloon device... not good if you don't have congestion.

    • michael11955
      michael11955 Anboyer04

      Posted

      Phixion & Anboyero4. It would seem we're all in the same boat.I find now that my balance isn't what it once was & strangely enough I hear some quite odd things,such as a dialling tone on a telephone .Not my phone but the phone of the person next to me,who can't hear it.I do find that the best thing to do is lie down quietly for about half an hour & clear your mind .Meditation is very good & mindfulness gives some relief,but it's not a cure.

    • Anboyer04
      Anboyer04 michael11955

      Posted

      i would agree with that- i have found myself getting panicky because of what seems to be overstimulation from certain noises... so i find myself having to get alone and just calm down

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