PE tubes or scan first?

Posted , 6 users are following.

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?

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  • Posted

    I have a few discs that I play when I lie down that deal with awareness,breathing & kindness to oneself & a couple of books with being at peace with oneself.They help somewhat,but are certainly not a cure.

  • Posted

    Sorry to hear your struggles! One thing that always helps me and my symptoms of ETD and Tinnitus are accepting permanent diagnoses and coping with the fact I'm not alone. I meditated to help with anxiety and started working out all the time. Eventually, your brain learns to "shut it off" so even if you don't find a cure, you can rest easy knowing there is a way out and you're not alone!

    That being said, do you hear your breath when you breathe? Does your voice vibrate when you speak? Do you ever hear your heartbeat or other sounds in your ear? If so, this could be a result of Patulous Eustachian tube. Although you may be aware of the condition, you probably don't know that there are about 4 surgeons in the entire US that can treat PET with surgery. Dr. Dennis Poe in Boston specializes in PET. You can submit a case to them where they will review your case between 6-8 weeks they will call you back and let you know if you need to go see them. Dr. Saliesh Babu in Michigan can also perform surgical procedures to help with PET.

    If it's ETD, there is a balloon dilation surgery that has pretty good success rates. However, I was a failed case of that surgery and now have permanent complications because of it. Just like anything you do, there are risks!

    I wouldn't freak out so much about the tubes in your ears. That's always been the first step to any treatment I've had with me ears, whether there is fluid there or not, and I see one of the best doctors in the country for ETD.

    Good luck to you!

    • Posted

      this is so super helpful- yes to all ur questions!! i hear my breathing, heartbeat, and vibration when i speak....

      i have been researching ETD rather than PET....

      so thank u very very much!!!!

      i will be looking this up and contacting those u mentioned in ur post!! THANK YOU

  • Posted

    i had my second opinion today- the dr was phenomenal.... long story short he said my issue is one of two things:

    PATULOUS EUSTACHIAN TUBE or

    SUPERIOR CANAL DEHISCENCE

    they are sending me for a CT of my temporal bone and then i will follow up wth a friend of his (the "expert" he called him) in Nashville to plan surgery ....as both issues can be resolved by surgery

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