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Eustachian Tube Dysfunction Cure

Posted , 60 users are following.

Tympanic
Tympanic

    As far as I know, there is not ETD cure, yet. I am interested in finding one. I am a Caucasian 34 year old man living in Santa Clara, CA. I have a BA in Psychology and work in a Neuroscience Lab. I was diagnosed with ETD a year ago. I have been suffering from it for 17 years. 13 years ago I had a bought of Bulimia that lasted for about a year. I had Anorexia Nervosa as an adolescent. I was given the maximum dose of testosterone to boost me through puberty since Anorexia was preventing it. Soon after I abused alcohol, marijuana, tobacco, and various other drugs until 2005. I believe all these factors have contributed to my ETD. I was diagnosed with OCD and Generalized Anxiety Disorder two years ago and have been taking Effexor (Venlafaxine) to cope. An Ear, Nose, Throat  doctor (currently called Head and Neck surgeon in US) prescribed me Flunisolide (coritcosteroid) to reduce ETD inflammation. It seems to help a little, but it is certainly not a cure, even when used for a significant period of time (i.e. 3 weeks).

    My ETD has been recently aggravated by my attempts to remove pimples and skin tags, which may be a symptom of OCD. Has anyone else experienced this situation? Numerous doctors say there is no connection between the skin abrasions and ETD, but they obviously don't have ETD.

    Primarily, I am asking for information regarding ETD. I need to know the statistics of ETD so that I can develop a valid research proposal. Health organizations neglect to respond to my questions. It seems that most biological research is involved in diseases such as cancer and heart disease, which is great. But, as I am sure that anyone reading this knows, Eustachian Tube Dysfunction is a debilitating disease that hinders one's ability to live to their fullest potential. As I have recently graduated with a Bachelors degree. I am researching what my next step will be. I am strongly leaning towards statistics and data mining, since that is a much needed position in all research fields.

    I am looking for information on the number of people with ETD worldwide and specific to certain regions. A timeline of ETD cases in these regions. Research groups, Academic and Professional, that are researching ETD. Research groups that are investigating ETD from the Neuroscience and/or Ear, Nose, Throat (Head and Neck surgery) perspective. Any other information is helpful as well, especially your own personal accounts of ETD. Please share your history, as much as you care to disclose, so that I can begin to develop an etiology of ETD.

    I have read many of the other discussions on ETD and recognize that many of you are suffering and I certainly empathize with you all. I am still trying to decide if my anxiety disorders are the result of ETD, my ETD the result of my anxiety disorders, if they are mutually intertwined, and/or if something else is going on. I very much hope to hear from you so that we may begin to develop a cure for ETD so that we may not be hindered by this ruthless malfunction.

   

1 like, 209 replies

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  • daniel18142
    daniel18142 Tympanic

    Posted

    Ok its been another 2 weeks and I still have no sign of ETD. Also my left back tooth / jaw area no longer has pain. Its great to talk and not hear my voice as well! Its hard to belive something as simple as dehydration can cause these issues. I urge others to drink more water just to see it this works. Please come back here and tell us how it went.
  • theresa04217
    theresa04217 Tympanic

    Posted

    I have had ETD for a few years now.  Prior to that, I thought I just had chronic conjestion in my left ear, that may have been brought on by a cold.  During that cold, I took Pregnisone (steroid), which actually led to my having nodules on my vocal chords.  My ear never did clear and began to have increased pressure inside.  I went to numerous doctors that prescribed allergy meds and the same nasal steriod that you took.  I did ALL of them, and took Pseudofed for over a period  of over a year.  Nothing helped.  I thought it might be dentally related (had issues with a lower left molar that had a vertical  root fracture.  The tooth was retreated 2x and eventually pulled.  Still no relief for my left ear.  Then, I went to see a TMJ specialist, because I felt like I was  having balance issues.  He said my jaw  was misaligned, and I was treated with jaw therapy, PT for my jaw and a night splint (guard) for my teeth.  Around this time (it was 2 years in) I was starting to feel like I was going crazy.  Feeling like I couldnt concentrate at work, feeling like the crazy congestion in my head  was never going away. The TMJ person indicated that often a clogged ear will open within a few months  of TMJ treatments.  I waited.  My ear never  cleared and I was released after 4 months of treatment with a much straighter moving jaw, but still a clogged ear. 

    I have had a MRI scan of my head....no abnormalities.  I do have a bulging  disk in my neck (between C4 & C5) but they say that  shouldn't be causing it. I have some odd swelling under my chin (strange lines), but none of my doctors  have been too  concerned.  The truth is, it  is only until after my actual ear doctor retired, after having gone through numerous visits, and 2 boughts of ear fungus/ear infections,  that my newest ENT diagnosed me with dETD.  This was a revelation...all this time, I had just thought it was conjestion.  However, I did know that when I had went to  my naturopath, she had tried to do the valvsa manuever (approx 5 times) because she suspected that my ET was not opening correctly. She could not get it to respond.

    Just about  a month ago, I had my new ENT inject a steroid (pregnisone) through my ear drum, which gave me a few days of relief, but my ear drum has since healed.  I will be returning in a few weeks to get a more permanent ear tube put in to see if that can help.  I am also experiencing another tooth issue on the lower left (same side as ear), and may need to get another root canal.

    However, My most troubling issue now is that I began to get tinnitus about 6 mos ago, and also have experienced some mild hearing loss in the ear.  The tinnitus keeps me up and is constant. I have a hearing aid that helps with hearing, but it doesn't help with tinnitus...it sounds like there's a power station in my head going on constantly...very high frequency pitches.

    I am considering possibly doing sound therapy treatment for the tinnitus or getting into a program for tinnitus, but I know this isn't the cause of my problem.  I believe the ETD caused the issues i am  having  with my hearing and tinnitus.  I am interested in the new balloon therapy to open the ET, but my doctor says I would probably not be a candidate.  Also still wondering  about these strange lines under my neck.....

    Any advice anyone can give is greatly appreciated. smile  Hope this helps someone else out  there.

    • Olizzieo
      Olizzieo theresa04217

      Posted

      Hi Theresa, did the ENT say why ballooning wouldn't be suitable? If nothing else has been suggested, you have nothing to lose by trying it. How did insertion of a grommet go? ETD can definitely cause tinnitus due to the hearing loss it can cause. Is your hearing loss conductive, sensorineural or mixed (a bit of both?) If it is conductive and if your tympanograms show very negative middle ear pressure or no middle ear movement at all, then ballooning would be something I would push for. Perhaps your ENT does not perform this procedure? I would ask if he does. If not look for someone who does. In Western Australia it is only in the research stage but if you are in America, you should be able to find an ENT that performs this. Please let me know how you go x

  • carloscrosa
    carloscrosa Tympanic

    Posted

    HelloTympanic. I'm an ETD suferer for 16 months now.

    After trying many things (everything that is on this page) etc etc.

    finally i found something that did improve my condition, to the point that i'm sometimes normal

    Dexamathosona.

    I didn't take all the doctor asked me to do, as the side effects were really bad, and i was in middle of tour working.

    But, i'm very surprised about the result, for moments my ear seems normal again! I thought it will never happen, i think everyone in this forum needs to go for it!!!

    • erica27186
      erica27186 carloscrosa

      Posted

      Would you mind describing your symptoms that you've had a bit more? This is a really intriguing discovery.

      I have severe issues with elevation changes, ear clogging and cracking.

  • kellyzboyz
    kellyzboyz Tympanic

    Posted

    My 23 year old son was born with Klippel Feil Syndrome (cleft palate, fused vertebrae in neck preventing him from being able to turn his head, A-symetry of the face and he is also hearing impaired in his right ear. Not genetic, just a fluke. Anyway, he was overweight in HS. After HS he decided to start eating better and exercising, he ended up losing 100lbs. that year. Apparently quick weight loss can cause Patulous Eustachianal Tube Dysfunction. He's been through a lot but doing great! He starts his third year of nursing school next month and plans on going on to become a nurse anesthesist. He fears that while in school his tube will fall out and he's hoping to find a very compassionate ENT that will expedite his procedure so that he'll be able to continue his studies and not miss too much. He is being seen at HUP in Philadelphia, PA for the procedure in three weeks, however, the surgeon told him if this is going to be an ongoing problem to find

    another ENT. Not the best beside manner by far but one of the best ENT'S. He told my son the best Dr. to see for PETD is in Boston, Dr. Poe, however, we live in NJ. I read a wonderful article about the upcoming treatment that as I understood, don't quote me on this, but I believe they said it would last a lifetime, who knows when it will become available! If you send me your email address I can try to send it to you. It's about seven pages long and very intetesting. Not sure how to post it on this site, unfortunately. My son chose to have a T-tube replace the one that fell out. Apparently it is supposed to last longer. I can't even imagine how frustrating this condition must be! My son told me it's a lot like holding a seashell over your ear, to get a little bit of a idea of what he's hearing along with all the bodily functions. I wish you all the best! Hopefully in the near future this newest procedure will become available!

  • Tbone1
    Tbone1 Tympanic

    Posted

    I just found this thread on ETD. I'm somewhat relieved to know that others have weird stuff and it's not in my mind, obut it pains me to know there's many of us out here that are suffering. I've been thru the mill with test, no tumors, no cancer, no TMJ (even though I was diagnosed and treated for it). My problem started out with just a little ringing and hearing loss in my left ear. At first they just said age and occupation. It got worse right around the time I had a severe case of acid reflux which eroded my esophagus and damage my vocal cords. All of this has since healed with treatment, but the ear issue remains. I have a fullness in the ear, a pulsating ring, and its accompanied with pain in ear, jaw, gum and palate. Sometimes the ear is beet red and warm to the touch. The Doctors I've seen can't figure it out. Ear, jaw and brain MRI's and CT scans are all good. I've been to several dentist and dental specialist. They've even pulled a tooth that they thought was causing me some issues. Nothing has helped or shown up. When I move my head from side to side or twist it, there's crunching noise in my left ear. This is not a pop or click, it a crunching noise. It can be heard with a stethoscope place just below the ear, but the Doctor is clueless. Has there been any new progress? 
    • Olizzieo
      Olizzieo Tbone1

      Posted

      I am an audiologist and have been for 20 years. I have never heard of something like this. I would love to know if you ever find an answer. If I were you I would write a very clear and detailed assessment of your symptoms and treatment then send it "Private and confidential" to 200 ENTs, so that their staff don't get the letter and bin it.  I was going to suggest emailing it but that goes straight to admin. Hopefully you will get some ENTs interested in diagnosing the problem or with some idea of where to go from here. Good luck!!!!!!
    • kellyzboyz
      kellyzboyz Tbone1

      Posted

      I recently read about a study done by Dr.Poe, I was told he is the best when it comes to Patulous Eustachian Tube Dysfunction. Anyway, this new surgical procedure, I can't remember the name offhand, but if you Google Research study by Dr. Poe of Boston Children's Hospital, I'm sure you'll find it. He treats adults as well! The procedure looks very promising, I'm keeping my fingers crossed! Where do you live, if you don't mind me asking? This is also supposed to be a lifetime cure for Patulous ET!!!
    • Tbone1
      Tbone1 Olizzieo

      Posted

      So you're suggesting that I write out a detailed letter and send it off to 200 ENT's How does one go about getting these addresses? I'm very interested in trying to resolve this! I'm an auto technician by trade. I alway tell myself if I was a car, I could figure this out! I live in Maryland and I'm surrounded by some of the greatest hospitals in USA! John Hopkins, University of MD Medical Center, I've attempted to get to the Mayo Clinic, but got blown off! This is a very annoying and life changing illness. Like most with this type of thing, I went down the depression route at first, but ive bounced back from that! 
    • Tbone1
      Tbone1 kellyzboyz

      Posted

      Thank you for the info, I will look into it for sure! Why do you call this Patulous ET? No one has ever thrown that phrase at me! 
    • kellyzboyz
      kellyzboyz Tbone1

      Posted

      ETD...it's just short for Eustachian Tube Dysfunction or ET...Eustachian Tube.
    • kellyzboyz
      kellyzboyz

      Posted

      John Hopkins is where I finally found a doctor able to treat my RLS! Great hospital! Dr. Poe in Boston is the Patulous guru, lol.
    • Olizzieo
      Olizzieo Tbone1

      Posted

      I think we all go down the depression route when something affects us that makes us feel completely hopless and powerless. So glad you are on the way back up again. I think you would get their addresses by looking up the phone book or Google ENT's in your area. If I couldn't find help, that is what I would do. Paying to go from specialist to specialist is time consuming, soul destroying and very expensive. 
    • erica27186
      erica27186 Tbone1

      Posted

      If you do so, please let us know who works out. I've been eyeing up John Hopkins and Mayo Clinic as well. I've certainly seen enough run of the mill ENTs who can't wait to get out of the room once they hear my symptoms.

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