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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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  • Im-fed-up
    Im-fed-up Tympanic

    Posted

    Hi there, I have been fascinated to read this conversation. I have been suffering from a very painful ear for 6 months now. I am also based in the UK . I went to see my GP in January who told me firstly I had "glue ear. There was nothing he was prepared to do . He sent me away saying the ear nose and throat specialist wouldn't be prepared to offer a appointment until 3 months had passed and that that it would be up to them to decide whether I would be offered a gromit. During the months of January,February and March I tried to clear my ear myself, using beconase and antihistermines and taking a course of antibiotics. none of which worked . I have tried hot and cold cloths applied to my left side of the neck as it felt like there is a straw lying under the skin at the side of my throat.  I have returned to the Doctor several more times as the symptoms do change  - like a temperature, numbness in the face, I have also had a watery eye. The persistent pain has made me depressed, angry and really short tempered. As each visit to the GP seemed fruitless - There's nothing we can do I have been told. Blow it out - hold your nose- take painkillers. It seems I had heard it all. I was looking at YouTube and Google searching for remedies. Onions and salt water have been offered as solutions. 

    I had finally reached my lowest point three weeks ago as I had just returned from a vacation in Egypt where swimming only made my symptoms worse and then the pressure in the cabin from the flight had made me feel like my head was going to explode, I was feeling quite unwell and dizzy and nauseous and after looking up the fact that an untreated ear infection could cause an infection of the mastoid - which I certainly don't want to get.  I figured I should write to the doctor, which I then did explaining everything I was experiencing. I was hoping for some help as it had previously occurred to me that in the 10 minute allotted appointment time with the Doctor,  I obviously  wasn't getting my point across adequetly. In fairness the doctor has  contacted me and said he would refer me to the ENT Department - this was the 3rd week of May,  and that is where I am at now - at the mercy of the 18 week NHS wait. My latest symptom is that I can't put my head down To put on my shoes or socks as the tube in my neck feels overstretched.

    I will continue to try to clear the tube, I try hot cloths, massage, antihistermines, nasal steroids and of course the perpetual blowing - trying to clear the blockage - let's hope I don't have a brain aneurism  from the pressure build up before my long awaited ENT appointment !!

    It is somewhat reassuring  reading what other sufferers are going through as you realise you are not the only one out there with all this going on,  and I wish all of us find some  relief and  a speedy recovery . Good luck everyone !!

     

    • Tympanic
      Tympanic Im-fed-up

      Posted

      Im-fed-up,

       Thank you for your post. It sounds like you are doing all the right things to tackle this problem. From my point of view, the symptoms you are explaining, such as "temperature, numbness of the face," sound like symptoms that may have a neurological aspect to it. Has your doctor mentioned that neurological dysfunction could be a factor? If not, you could mention it. In the past, many have suggested trigeminal neuralgia as a possibility for my symptoms. Although, trigeminal neuralgia does not fit your symptoms, nor mine, a neurologist may have some good answers. In fact, while writing this, I have decided to visit a neurologist to see what they can offer, as opposed to my ENT.  Although, it is good to see the ENT. I recommend, at least, finding from the ENT if you have negative or positive pressure in the middle ear. I have negative pressure. Although I am not exactly sure what this means in the scheme of fully solving my eustachian tube dysfunction, it is helpful for myself to know when I attempt to "pop" my ears and alleviate the pressure. I am sure negative vs. positive pressure is very important when considered by a trained professional.

        I wish you well. The valsalva maneuver works fairly well in relieving building pressure.

  • Tympanic
    Tympanic

    Posted

      I wish to thank everyone who has posted on this page. I am currently seeking employment in clinical research of eustachian tube dysfunction. Also, I am learning 3D modeling and animation, with Blender software, to help me develop a better idea of the dynamics of ETD.

      Although my ETD is consistently bothersome, I am dealing with it with a combination of the valsalva maneuver, neck massages, nasal irrigation, exercise, nutrition, relaxation techniques, and pursuing the cure for ETD, amongst many other things, that seem to stem from and/or to ETD.

      I wish you all well and do not let ETD, or any other problem, ruin your fundamental dreams and desires.

    • Tympanic
      Tympanic

      Posted

      Also, I greatly welcome all the information regarding your symptoms, diagnoses, etiology, prescriptions, etc.. that you are comfortable with disclosing, as I am in the beginning stages of developing a database that accurately depicts ETD.
    • shannon85303
      shannon85303 Tympanic

      Posted

      Hey there!

      I hope you are doing well and having a good ear day! I am just wondering how you are doing with your reserach and with your search for employment in clinical research. I was thrilled to read your post(s)! We need more people like you to help get the ball rolling with USEFUL solutions to ETD. I swear if I found a solution to this nightmare I would dedicate my life to making sure everyone in the world who suffers from this would know too!!! Haha. Anyways, Just curious how things are going? I live in Canada but actually visited Dr. Brian Weeks in San Deigo last month. It was a very expensive consult to say the least but he was amazing and I would recommend him! He thought I would be an excellent candidate for the balloon dilation procedure which was music to my ears, until I found out the price. If it comes down to it, I will find a way, but in the meantime I really hope to find somebody that does it in Canada. Look forward to hearing from you!

    • shannon85303
      shannon85303 lauren_38764

      Posted

      Hi Lauren!! Sorry I haven't been on here in a while. I went to see Dr. Kolenda in Oakville, Ontario a couple weeks ago. He also thought I was a great candidate for Baloon Dilation of the eustachian tube. The price I was quoted by the US doctor (as a Canadian) was $15,000 USD (plus the exchange rate ... yikes!). Dr. Kolenda quoted me around $3500. Both doctors told me they have an 80-85% success rate. Dr. Brian Weeks has treated close to 1000 patients (as of January 2016) and Dr. Kolenda in Canada has treated around 30 patients. Neither reported any negative results, just situations where it didn't work on the patient. My biggest fear is this becoming any worse, so that was good to hear. I asked both doctors if this was their wife or kids, would they recommend this procedure and both said yes 100%. I'm still nervous to have it done, but I feel much better about it now. I'll have to wait a while longer as I'm currently pregnant with twins and can't have it done while pregnant (due to general anesthetic). Has anybody else had this done? I would love to hear more from actual patients!  Thanks.

    • kelly91202
      kelly91202 shannon85303

      Posted

      Hi Shannon.......I see your post is 11 months old, So I hope you get this message.

      Can you tell me a little more about your consultation with Dr. Brian Weeks. I heard he is a wonderful doctor. I've heard different stories about the cost. Insurance pays for some of it but not the Balloon.??

      I'm considering making an appointment but would like more information about what was maybe told to you......trying to get as much information as possible before making a long trip to San Diego.

      Thanks!

  • Im-fed-up
    Im-fed-up Tympanic

    Posted

    Hi Tympanic, Thanks for your response to my post. I have been down the neurological route - but for menningitis - I've had a brain scan and other tests and actually was told that the menningitis had damaged my central nervous system so I do now suffer with those dreadful electical buzzes that you would associate with pushing your fingers in an electrical plug socket. I find that gabapentine helps considerably.Also that balloon thing that you can buy or get prescribed is useful. (You inflate it by holding one nostril closed to try blow out the eustachian tube.)

    I didnt realise that it might be a lifetime illness - I was hoping that once treated it didnt come back.

    I kept blowing and blowing my ear out the other day, but then spent the next 12 hours rubbing my neck as it then felt "bruised".

    It's a miserable situation.

    • Tympanic
      Tympanic Im-fed-up

      Posted

      Your situation sounds like a severe one. I am glad that there is some relief with medicine and treatments. I do hope more advanced treatments are quickly developed for your conditions.
  • gene71234
    gene71234 Tympanic

    Posted

    I'm glad I'm not alone.I was diagnosed with ETD last week .This started 3 months ago when I got colds and used the neti pot to clean my sinus.I think I did the wrong way and water goes to my middle ear.Went to the Dr. And prescribed me antibiotic but it did not work.After a month went back to the Dr. And told him that I had still fullness and cracking and the pain starting to affect the back of my neck going to my skull.He prescribed my a very strong antibiotic and Claritin .I asked him,Doc . Is their any possible way that you can see what's going on inside me ear?,so he referred me to ENT .I didn't realized that it will take me 13 days to see  ENT DR  here in US .Went to the pharmacy and started to be worried when I see the side effects of the CIPROFLOXACIN .This is a very strong antibiotic and I just can't take it.the side effect is too much.I been taking already antibiotics and I already had a yeast infection.I decided to change my Dr.Went to see another Dr.and this Dr.told me that I got a otities media and prescribe me Zulfamethoxzole/trimethoprim ,Claritin and advice me to do the valsalva maneuver .June 3 ,finally went to see the ENT DR.. I was diagnosed with Eustatian Dysfunction .After 3 months,confused ,sleepless night,lost 20lbs. complaining of fullness and cracking sounds inside my ear .When I told my husband and friends ,they just look at me .and say ,you look perfectly fine to me.If they only knew this ETD starting to ruin my life.My ENT DR. Didn't give me any antibiotic .He told me it will take time to heal .
    • shannon85303
      shannon85303 gene71234

      Posted

      Hi Gene,

      How are things going with you? I hope better! I have been suffering wtih ETD for 5 years now and would do anything to find a cure. I know how you feel when people think you look perfectly fine while you are suffering inside alone and feel helpless, feeling awful all the time. I hope you have found a doctor that is helpful. Would love to hear an update!

    • gene71234
      gene71234 shannon85303

      Posted

      Shannon,Sorry for the late respond, just had the result of my

      CT scan last week and they can't find anything wrong .But i still

      Had all this symtoms.I still hear some clicking sounds inside my

      ear, and I notice too that when I turn my head from shoulder to

      shoulder I can hear cracking sound .And the feeling of like

      something or a food is stuck behind my nose.My husband thinks

      I'm nuts.Two ENT saw me already and can't find anything to be

      operated. I will try to see a Chiropractor , hopefully they can help

      me before my husband thinks im mentally ill..lol.

    • Scocar
      Scocar gene71234

      Posted

      Hi Gene. Your not nuts!! .I also hear some clicking/popping sounds inside my ear, and I also have the crackling sound when I turn my head from shoulder to shoulder. I saw a Chiropractor. He helped with the rest of the body but did not help relieve symptoms of ETD. He actually suggested I see another specialist. 
    • shelly49178
      shelly49178 gene71234

      Posted

      Same thing happened when I did neti pot. Actually 3 of us at work did it and we all got clogged ears. Unfortunately my ear didn't clear yet. How are you today?

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