Eustachian Tube Dysfunction Cure

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    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.

   

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  • Posted

    yes... this all started following an ear ache and a trip to Arizona.  i had a little fullness and always had to yawn to pop my ears... but now... the popping/crackling happens on its own every time i swallow... 
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  • Posted

    Mmmmmm......so you do not have chronic otitis (serrous fluid)  production....but that does not mean from my limited understanding that you do not have some sort of pathophysiology - that has gone wrong in the ET.
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    • Posted

      The most recent message from my ENT states that I do not have ETD, due to the results of the tympanogram. I was certain he had said that I did have ETD. I am awaiting his reply from my message confirming this. This is an ENT at Kaiser Permanente and they are not very personal. As I mentioned, he prescribed me Flunisolide and said that was alll he could do. I have an appointment at Stanford Medical Center next week. They have an undiagnosed diseases department and I am hoping they can shed some more light on this situation.

      Regarding balloon tuboplasty, my ENT stated, "It may turn out to be helpful for those patients who have chronic eustachian tube dysfunction despite PE Tube placement (which is the standard treatment); however, it is considered experimental at this point." I will let you know what I find out from Stanford.

       

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    • Posted

      Wow, I am impressed with the ease of access you have to all these 'medical facilities'.  Here in the UK we have 'rationed healthcare' - but it is based on clinical and appropriate need based on research evidence.  Our healthcare system stops duplication and superflous investigations and escalating healthcare costs (but: no choice, facilities that are poorly furnished and worn out healthcare professionals due to under-resourcing).

      All the best at Stanford.

      I broadly agree with the last paragraph from your ENT.  I certainly meet the criteria for chronic 'ETD'; it is my intention to pursue balloon tuboplasty this year.  Please do let me know how you get on at Stanford.

      I am going to start an 'Action Group' here in the UK of chronic sufferers and try to lobby for a group meeting with an ENT specialist performing balloon tuboplasty.  All the very best Tympanic.

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    • Posted

      I suppose the US does have good access to medical facilities, for a cost. It will cost me $100-$500 for a diagnostic visit. Although, I am looking into discounts as I am a college student and son of a Stanford Alumnus. I wish you luck in getting the Action Group together with the ENT. I wish I could help. My brother does have a friend who lives in London. I may as well inform him of your project so that he can direct any ETD sufferers to it.
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    • Posted

      Cheers Tympanic.

      Access to healthcare as you know - is free in the United Kingdom.

      But as I said before.  The  'presentation of healthcare settings' is generally poor in the UK.  There is no choice, it is paternalistic, patient's have no 'power'.  However, according to one of your own 'think tanks' - Commonwealth something or other...it is the best healthcare system in the world.  It has provided equality of access and equality of outcome in health successfully for 60 years.  It has its critisms and faults yes.

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    • Posted

      Yes, the US healthcare is fortunate. I hear Obama is trying to make healthcare more paternalistic, although I am not well educated in the subject. I did just send my brother an email, asking him to inform his friend in London of this discussion and your action group. Hopefully he is able to send some people your way.
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    • Posted

      Jason,

        I was examined at Stanford Medical on Friday Jan. 16. The doctor stated that I did have ETD. He said my Head and Neck Surgeon (ENT) had not properly communicated the diagnosis. It seems that, at least at Kaiser Permanente in California, they base a ETD diagnosis solely on the results of a Tympanogram, which determines how much blockage in the ET at the moment. When the Tympanogram was done on me, I may not have had much blockage compared to other times. The Stanford doctor said that since I have the ear fullness, need to perform the valsalva, and am somewhat relieved by nasal anti-inflammatory steroids, I do have ETD. He mentioned that I may be overly sensitive to tactile stimuli, especially around the area of my ET, which would explain why the side of my head where the ETD is typically located corresponds to an abrasion or some other problem on that same side. Also, due to my history of anxiety, the overly sensitive hypothesis does make some sense in my case.

        The doctor recommended trying an elimination diet to determine if I am allergic to anything. Primarily, he mentioned cutting out dairy, red meat, gluten, and bananas (viewed as mucus causing), one at a time to see if one or the other was the culprit. I have also started juicing fresh fruits and vegetable to attempt to cleanse and fortify my body. My ETD may be, at least partially, due to a buildup of toxins.

        On Mon. Jan. 19 I suffered a parietal bone skull fracture and a broken left ring finger as a result of an assault in downtown San Jose, CA. Although, I am recovering, I am forced to focus most of my energy on making sure my skull heals properly and preparing for surgery on my finger. Obviously, I will not be trying any elimination diet now, especially dairy, due to its bone building calcium. ETD is a ruthless problem. As soon as the initial pain from swelling on my skull went down, my ETD was back in full force. Although, I continue to do some juicing and am finding that it is helping, somewhat, and I believe it may have some therapeutic potential.

        I hope that this update was helpful and I hope that the Balloon Tuboplasty Action Group is making headway. I directly emailed my brothers friend in London to inform him of the Group and its need for ETD patients. I have not heard back from him, although I will continue to do what I can from here. Take care and keep me updated on your progress.

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    • Posted

      I had mild ETD for years in my right ear, after sinus surgery in Feb 13, it totally cleared up for about three months. Unfortunately it is back, hearing loss, pain.  Two different  ENT's recommended Claritin D for 15 days - the generic AllerClear D-24 hr (from Kirkland works better for me).   I have no idea why. 

      I also use a vibration machine (sears $250). During the shaking (I put it on 14)  I slowly turn my head and point my bad ear to the ceiling, side to side and to the floor.  This helps drain the canal.  Also, I noticed at my dentist office, when the chair is just past parellel to the ground my sinus and ET clear. 

      When I visit a higher elevation (I live in south florida the elevation is sea level) I don't have the fullness, hearing loss or pain.

      After doing a cleanse, with the Dr Junger "clean program".  I found aged cheese, cheddar and parmesan cheese makes my right sinus swell and yes, my ET fills up.  I love cheese and won't give it up!  Good Luck, hope some of this helps.  Lorraine

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    • Posted

      I am sorry to hear about the assault tympanic.  That is dreadful.  I have currently saved for the Tuboplasty.  I estimate the success rate to be 40-60%.  I am taking this further now.
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    • Posted

      jason,

      I am glad to hear that the Tuboplasty is underway. Please keep me updated with the progress. I wish you all the best and hope the procedure is a complete success.

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