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Enough is Enough - my experience to date

Posted , 12 users are following.

MommaKaren51
MommaKaren51

I started with ETD around May or June of 2014 after a bout of Pertussissad I actually thought there was something living in my mattress. I finally mentioned this to my primary who sent me to an ENT who immediately diagnosed ETD and sent me on to Dr. Dennis Poe who is, as far as I can see, world renowned for treated this..but seeing him is very, very difficult. After being told I needed the million dollar work up of a CAT scan, MRI and hearing test I was finally able to see Dr. Poe, who is really nice BUT after waiting all that time I was told to go home and I needed to try saline drops, super saline drops and EarFDN by Dr. DeBart (which by the way cost $50.00). I have tried the first two options with absolutely no relief. I am hesitant to try the third because reading up on it; it appears to contain boric acid...hmmmm..In any case, I am going to try to get back in to see Dr. Poe if I can get by his guards (secretaries and Nurse practitioner)...I was very, very upset when researching this to find a YouTube video of someone who got on tv to discuss her condition on one of the doctor shows and lo and behold he was able to get her into Dr. Poe so Dr. Poe would perform the procedure...WOW no months and months of nasal drops?????

I am soooooo frustrated that I have actually thought about asking to have the ear drum punctured so I loose hearing in that ear..

Just needed to vent and am so glad I found this group...It is truly depressing that no one seems to be able to find a cure for this horrible condition...

0 likes, 20 replies

20 Replies

  • renee28756
    renee28756 MommaKaren51

    Posted

    What are your symptoms?  do you have crackling/popping in your ears when you swallow?
  • clare14843
    clare14843 MommaKaren51

    Posted

    Hi, what do your ears feel like?? Its so hard to explain to people I know. I started with bad ears last year. I've suffered with my left ear for years, but after a bout of labyrinthitis I was left with a weak right ear..often feel off balance.which in turns makes you anxious. I've been told I have eustachian tube dysfunction in my left ear, but that I have to 'manage' my symptoms...this makes me cross when there is a cure.
    • MommaKaren51
      MommaKaren51 clare14843

      Posted

      It sounds like that is constant ly an ocean in my ear and sleeping is difficult brace I can't turn sound off..I can hear my pulse
    • nisha73986
      nisha73986 MommaKaren51

      Posted

      Sounds like you have what I have which is not etd it's actually Patulous Eustachian tube dysfunction. This is when the tube is abnormally left open. It's so frustrating to say the least and I can hear my own voice in my head really loudly and even when I breathe it feels like I'm breathing through my ear it's that loud. For a short term fix try tipping ur head up side down. It sounds crazy but it actually helps to close the tube.

      I'm still looking for a cure for this rare yet frustrating dysfunction sad

      P's. I have been for many scans hearing tests etc it never shows anything which is actually typical of the condition when reading up on it.

      I'm going to try grommets soon I will let you know if it helps at all. I'm willing to try anything sad

  • lauren_38764
    lauren_38764 MommaKaren51

    Posted

    did you ever meet with that doctor? if so how was he?  did you ever fix your tube dysfunction? 
    • MommaKaren51
      MommaKaren51 lauren_38764

      Posted

      Yes, I actually did get to meet him.  He is wonderful.  I had the surgery and it worked about 85%; he did have to put a tube in my ear (like the kids get) to drain fluid before I flew but that was pretty easy.  I do have to go back to check in with him about six months...
    • carole83992
      carole83992 MommaKaren51

      Posted

      What surgery did he actually perform? And was was the diagnosis?  Mine is so bad and I have had many surgeries. Tkx.
    • caryn1980
      caryn1980 MommaKaren51

      Posted

      Yes, please, what surgery did you have?? I'm going to the ENT on Dec 19th after what will be 6 weeks of this. I work with kids as a Speech Pathologist and understand this is likely ETD, but I need relief as it is affecting my work (not to mention the very irritating side affects like the deafness, tinnitus, and hearing my speech, breathing, and eating in my head). I have already done weeks of decongestants and tried all sorts of ways of making my ear pop with no help... I can feel fluid when I tip my head up or down.

    • Casey1337
      Casey1337 MommaKaren51

      Posted

      Hi, Karen. Specifically, did you have the balloon dilation surgery?  Did you have it on both ears or just one?  And also, did you have to get CT and MRI scans prior to seeing Dr. Poe. I am not yet diagnosed but am fairly confident I have ETD in my left ear. If you would be willing to chat a bit and answer a few of my questions I would greatly appreciate it. Thank you. 
  • carole83992
    carole83992 MommaKaren51

    Posted

    My name is Carole M. I have also been to se Dr. Poe and YES he is fantastic. I was diagnosed with Eustacian Tube Dysfunction. I have had this condition for about 5 years. Unfortunately I,live in Canada, where he referred me to a doctor here in Ontario (I live.just outside Toronto). I am in the process of going to see him again (assuming I can get an appointment). I have all the symptoms, it has worsened since I saw DR. Poe and the subsequent surgery performed here. I would desperately like it if you could share with me the surgery/treatment that you have recently had done.

    Sincerely,

    Carole M.

    • caryn1980
      caryn1980 carole83992

      Posted

      Carole, what kind of surgery did you have? You say it didn't help you? I've got the same thing going on and have an appointment with an ENT in a couple weeks... Thanks!

    • NBC
      NBC carole83992

      Posted

      Hi Carole,

      Can you please help me? I'm also in Toronto and I've suffered from TMJ/ETD issues for 7 years now. I can never get any traction with specialists and they just tell me to deal with the condition.

      Please please please get back to me with who you saw in Ontario.

    • carole83992
      carole83992 NBC

      Posted

      I have seen many specialists in Toronto and surrounding areas. Other than Dr. Poe in Boston, Mass., the only other Dr. that "gets" this condition is Dr. Lorne Parnes. He is in London Ontario 519-663-3604. He actually liasioned with Dr. Poe after I went to Boston and performed the recommended surgeries. The surgeries were not successful. I have had this condition for years and realize it is a very dicey issue at best. I am in the process again to see Dr. Poe, hoping that there is more info and more up to date technology as this is a very debilitating condition. Keep in touch.

    • caryn1980
      caryn1980 carole83992

      Posted

      Carole- what were the surgeries you say were unsuccessful?? Thanks!
    • carole83992
      carole83992

      Posted

      Had stents (tubes) in both ears, FESS - sinus surgery, and I can't remember the name of the last surgery recommended by Dr. Poe and done here, a patch inside and behind the eardrums. No difference!

    • tally123
      tally123 carole83992

      Posted

      Hi Carole, 

      I live in Toronto and this started for me after a crazy sinus and ear infection I developed after getting a virus of my baby's when she started daycare.  What hell.  I'm sorry to hear that you've been dealing with this for years.  Makes me feel for you and adds to my fears about what I have.  I've already been to the ER twice, my family doc for recurring treatment and to an ENT.  I have all the signs and symptoms of ETD (vs. Patulous ED) and am now hearing that my hearing is great and my ears look like they're healing (even though they feel full and popping and cracking like I'm on a plane and like I still have fluid in there).  Basically, the ENT at Sunnybrook feels that my sinuses are the issue as they are still inflamed and full of polyps post infection and I now need to see an ENT specializing in sinuses is the best next step (in addition to taking multiple steroid and antihistamine sprays which so far are not relieving anything).  How long did it take you to see Dr. Payne?  Why are you not a candidate for the balloonoplasty of the ET and have you heard of a doctor called Dr. Jack Kolenda in Oakville?  Thank god for this forum.  It's helped me advocate for myself. Thanks in advance for your help and hoping that you get some answers and help soon!

    • meldob_68953
      meldob_68953 tally123

      Posted

      Hi there, I was just wondering if you found any relief? I have had ETD for 8 yrs but lately it has been getting worse. My ent has only suggested the ear tubes in which I don't want as it will decrease my hearing and I have heard of people it liking them. I did some research about balloon dilation. I am also from Canada, and recently emailed dr Kolenda in Ontario but I'm just so scared to do anything. I'm worried my symptoms will get worse. Did any of you have the balloon dilation? Did it help? Any info would be great thanks 

    • Ver.
      Ver. carole83992

      Posted

      I hope to hear some feedback updates from Carole on this. Has she accomplished or learned anything new since her last procedure? Pls. return to tell!  I have questions to ask too. Thanks   -V.
    • Ver.
      Ver. tally123

      Posted

      HI Tally, I read you were trying to ask Carole about why she didn't have balloonplasty. This is for people with problematic chronic ETD where they're too often shut. Carol had the opposite which occurs from long term ETD not being taken care of and progressed to PET - (Stuck wide open) so she had stents put in trying to thicken the ET to help some closure of the ETs. Apparently it seem they did not work...not sure why or what exactly happened which is why I'd like to ask her.

      Have you had any luck on your end for you ETD? Did you reach out to Dr. Kolenda or Dr. Parne? I have been greatly suffering for nearly 5 yrs now.  -V.

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