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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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  • jason_03617
    jason_03617 Tympanic

    Posted

    Hello, I have had 'ETD' for fourteen years. Together with periods of anxiety related to this and ? chronic sinus disease.  Have you seen the latest research on ETD tuboplasty?
    • Tympanic
      Tympanic jason_03617

      Posted

      Jason,

      Thanks for the note. I have read some research on tuboplasty. I mentioned it to my Head and Neck Surgeon, although he said that it would not apply to me. What have you learned about it?

    • Tympanic
      Tympanic

      Posted

      Jason,

      I just read what you wrote in reply to steve1971 regarding tuboplasty. Is there anything beyond that that you have learned? Are there any treatments, minor and/or major, that have provided you any relief, temporarilly and or permanently?

    • jason_03617
      jason_03617 Tympanic

      Posted

      Nothing has worked for me. I believe some lucky fellows may get relief from 'grommets', sprays etc, netti potts. I guess it depends on the severity of the problem and the length of time with the problem. I believe EUnetHta, the equivalent of the FDA in Europe is doing a health technology assessment on the balloon tubopasty. We have a few ENT's doing it here. I don't think 'NICE' the UK equivalent of the FDA done a health technology assessment to date.
  • jason_03617
    jason_03617 Tympanic

    Posted

    Correction ! NICE have started a technology appraisal in 2011.
    • Tympanic
      Tympanic jason_03617

      Posted

      Jason,

      Thank you for all that information. I hope that you can find something that helps. I found that, for me, performing the valsalva maneuver, amongst other pressure equalization done through inhalation and exhalation, temporarily helps me. Some days, on my own, I find myself performing the valsalva maneuver all day, while studying. It would be horrible if my life was reduced to just performing the valsalva maneuver all day. Being in public has some effect, since I would be too embarassed to perform the valsalva constantly and my inner ear pressure is sometimes forced to equalize, temporarily. All of this is a problem since none of it should happen in the first place. I am seeking a permanent solution to Eustachian Tube Dysfunction, ideally with no side effects. I live in Silicon Valley, CA and have the opportunity to utilze the best of modern technology. Although, many others due as well and the competition is fierce around here. I will keep you and this group updated of my results. Please feel free to do the same. Be well.

  • jason_03617
    jason_03617 Tympanic

    Posted

    Tympanic.  The only viable solution to me as a lay person is: "There is a mechanical problem in the eustacian tube with inflamatory and scare tisse being produce, together with chemical mediators such as cytokines proucing brain fog etc"  This would man a surgical correction to repair the damage - hence balloon tuboplasty as being the most promising developement.  Sucess will depen upon a number of factors including selecting a suitable candidate.   Did you find the reason why you would not meert the selection critieria for a tuboplasty ?

    I am interested in meeting with other individuals (UK based ideally) to form a group to present on 'mass' to an ENT specialist performing baloon tuboplasty.

    • Tympanic
      Tympanic jason_03617

      Posted

      Jason,

      Looking back on it, it was Eustachian Tuboplasty, not Balloon Tuboplasty, that I did not qualify for, due to a lack of fluid behind my ear. I have not asked my ENT about Balloon Tuboplasty. I will do this and let you know the outcomes.

    • jason_03617
      jason_03617

      Posted

      Shocking spelling...could do better !
  • renee28756
    renee28756 Tympanic

    Posted

    may i ask if any of you suffer from  pressure popping/crackling when you swallow?  i have been diagnosed with ETD about 8 weeks ago.  

    Jason... i am in the US as well.

    • jason_03617
      jason_03617 renee28756

      Posted

      Crackling etc can be a feature of ETD as you see on other forums etc.  I have experienced this just a few times in 14 years ( a collapsed ETD?)
    • jason_03617
      jason_03617

      Posted

      Perhaps you may experience ETD just for an 'acute' period.  Is it following an infection or chronic sinus disease?
    • renee28756
      renee28756 jason_03617

      Posted

      how long can it be considered 'acute' it has been 8 weeks so far... and it seems the crackling is actually louder than previously... when i first noticed it was a slight pop... which i would love for it to go back to now!
    • jason_03617
      jason_03617

      Posted

      Perhaps something to with the physiology of the ET when lying flat???
    • Tympanic
      Tympanic renee28756

      Posted

      Renee,

      I do experience popping/crackling when I swallow. Although, with my situation, I attempt to cause the popping because it seems to release built up pressure. It typically does not happen when I swallow normally. I have to tense some neck muscles to cause a sufficient relieving popping. My condition was not the direct result of an ear infection.

      Was has your doctor recommended and/or prescribed?

      I recommend occassional nasal irrigation/neti pot, good nutrition, exercise, clean fresh air, and, if you are so inclined, meditation/seeking divine intercesion. I also recommend contacting Stanford Medical Center in Palo Alto, CA. As I mentioned in a reply to Jason, they have an undiagnosed disease department and may have some answers. Also, if you have not already done so, I suggest getting an allergy test done. I know many people who have unexplained diseases that turned out to be the result of an allergy to something as simple as dust or mites. Please, let me know of your progress.

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