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Eustachian Tube Dysfunction Cure

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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 anxietydisorders 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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  • jacqui3187
    jacqui3187 Tympanic

    Posted

    I live in Australia in Melbourne.  I'm in my late 40s and I've had chronic ETD (diagnosed) for almost 7 years. I have suffered from seasonal allergies most of my life and believe this is a contributing factor.  The ENT I saw told me there is simply no cure and if he had one he would have hundreds of patients lining up for it.  I don't know whether anyone in Australia is doing balloon tuboplasty but I would be willing to try almost anything.  I can't even eat without my ear becoming completely blocked and travelling is a nightmare.
    • tony0321
      tony0321 jacqui3187

      Posted

      Hi Jacqui. Did you find anybody in Australia who is doing balloon tuboplasty? I also suffer from chronic ETD but to date have had no success in finding anybody who does this procedure in Australia.
    • Olizzieo
      Olizzieo tony0321

      Posted

      Not sure why my comment was deleted as I sent you information in answer to your question??
  • nina14657
    nina14657 Tympanic

    Posted

    I am glad I found this message board on ETD, i am living, a nightmare. I have had this, with nasal passage inflamation for 18 yrs.  I was dealing with it ok.  Up to 4 yrs ago, all things went wrong. A doctor gave me 2 wrong sprays and i bled from them. Then, I don't know what happen, water got up in my nose, things got in my ears. Now, i am living a complete complete nightmare. Where most of you, have the problem on the facial area , of the ears, my eustachian tubes, via nerves, travel up to my scalp, over the back to my neck on both sides...to my back, this process goes on all day, up and down back and forth....now my left ear, cuts into my throat and makes my nerve in my stomach beat, and it makes me shake. I went to take a sip of camomile tea, i know you won't believe this, but, after doing so, it irritated things even more, now i have tight tight tubes, and when it moves toward neck, the pressure or inflamation whatever it is, is harder then concrete and i cannot breath at night, developed some insomnia.  The doctors and pharmacists are trying to come up with combos of meds, to try to help me sleep.  The pressure from both sides of the neck, to my back, is so rubbery and heavy, i can't breathe. In the front of my body, where the stomach is, i have some pressure, that relates to the throat where the ear of the left, is, and makes the heart beat, heavy pressure in chest. How can i live this way. Up to few mths ago, 4 yrs ago, i was nothing nothing like this.  I fear depression setting in, it seems like i don't care about anything else but this. How can you not think about it?   I live with my 82 yr old mom, my dad passed, no siblings or kids, some friends, on FB, from school, some family friends that call. I am trying to get an aide, via medicaid, because i don't want to be alone with this, and I want my primary, who comes to my home, to have the insurance approve a 24/7 nurse.  One of those nurses can administer medicine, injectable. I cannot go on, not sleeping.  It is one thing to carry this horrifying cross, but i need to sleep. I am also a 3x cancer survivor and diabetic , seems like nothing else interest me but this issue, and, i can't help it.  I am 54, I think how will i enjoy the rest of my life, and deal with this. When the temperature changes forget it, i am far far worse then worse, picture someone tighting the sides of your head, putting pressure, by pressing on both sides of your head. I am housebound, due to this, meanwhile, im missing my other follow up appts, for mamo and ultrasound, missing my MRI of pelvic, visiting the oncolgost and diabetic doc and breast surgeons. I fear going outside now, for what might happy, with the weather, If i get a cold?  It is not a cold, where most have, it gets intertwined, in the rubbery sensation around my ears and toward back of sclap and neck, and down my back. I worry each night, will i sleep tonight.  I sleep on a recliner, cant put my head down on bed, will love pressure, i can barely put it on recliner.  I fear the winter, this new, way of life, with this eustachian tubes and nasal passages is new, i was fine as i mentioned in march, and other mths behind.  I need sleep and if i cant sleep, they are going to have to inject me and have me have a nurse 24/7.  Or, i will take legal action,  these doctors, get away with to much.  Way way back, when i first got this, if the doctor knew what he was doing, none of this would have happen. I had this when i was 17, the ENT got rid of it, at 35 i got it back, and all they did was ruin it and, not do things right. If you people only knew, how tight, like rubber my head feels, the back side, expecially left ear, you wouldnt believe it.  Diff temperatures, do different things to this,  the pain, of when getting a cold, imagine, winter, temperature goes down, a cold, and this rubber, they better do something i cant live this way.....my mother doesnt understand the suffering i suffer, she said she believes me, but being old school italian, not sure....she and i fought alot the last 2 mths, i was not like this,  the last week in March is when things got so bad and worse now........im desperate for help....when will they find a cure for ETD? i cry, and suffer, and housebound and no sleep....and getting depression fast. Losing hope.
    • jason_03617
      jason_03617 nina14657

      Posted

      I am sorry to hear this.  I feel dreadful with my issues too.  Are you better in dry hot air?  I have just finally saved enough money for the tuboplasty.  I guess it doesn't solve everyones problem - I estimate the success rate to be 40-60%.  Incidentally how many fillings in your teeth do you have?
    • Tympanic
      Tympanic nina14657

      Posted

      nina,

        I empathize with your condition and realize that you what you are dealing with is horrific. I encourage you to use exercise and nutrition to strengthen your body's systems. It sounds like you've been through a lot and I hope you will soon find things that will help to improve your physical and emotional state. I have found that a good balance of cardiovascular and strength training exercises keep me resilient enough to deal with all the adversities brought on by ETD.

        I do hope a ETD cure is in the near future. I am working on gaining employment in clinical research that targets ETD. There is certainly a lot of factors involved in this condition and it is very difficult to pinpoint a cause. Even worse, there is not a lot of interest by the medical industry, at large, to invest in research on the subject. Fortunately, there are a few groups dedicated to ETD and I hope they succeed in their efforts.

        What were the two nasal sprays that you used? I use Flunisolide sometimes, although it does not help much. I am trying to determine the types and incidence of nasal sprays that doctors are prescribing for ETD.

        I wish you well and encourage you to not loose hope. At least be encouraged that others can empathize with your condition and that there are currently efforts underway to fix your problems.

       

    • theresa04613
      theresa04613 jason_03617

      Posted

      Hi Jason, How are you getting on? I am based in the UK and have this also. Have you had any success? Thanks
  • joshs
    joshs Tympanic

    Posted

    Just another sufferer here looking for solutions. I'm also interested in the baloon dilation procedure, there are a few providers in my area (southern ca). Are you scheduled to get it done?
    • shann33
      shann33 joshs

      Posted

      Hi Joshs,

      I too am suffering from ETD and live in Los Angeles. Wondering what are the doctor's names that do the balloon surgery.

    • joshs
      joshs shann33

      Posted

      There is Dr. Brian weeks in San diego

    • joshs
      joshs

      Posted

      I also found beverly hills sinus, Google their site.
    • Tympanic
      Tympanic joshs

      Posted

      Hi joshs,

      Thanks for posting. I am not scheduled to get the balloon tuboplasty. My doctor said that my symptoms do not meet the profile for the procedure. As of now, I am working on obtaining employment in Otolaryngology research, in hopes of gaining a better understanding of the eustachian tube and its surrounding structures.

  • eyesonfire
    eyesonfire Tympanic

    Posted

    Hi. I am new to this. I live in Canada. June 2014, a year ago, when my ear started popping out of the blue. It was my left ear only. I saw my GP who suggested allergy medication and nasal spray. I tried both and it did not work. I had 2 more nasal sprays and again, did not work. I went back to my GP and referred me to an ENT. I had to wait 5 months ... Month 5, I was still suffering from ear popping and my hearing started to seem muffled and lots of ear pressure and fullness in both ears. I saw an ENT who had nothing to say or helped at all. He said I have ETD and good luck. Only suggested an ear popper device. I bought an ear popper which costed me almost $200. It works ... but only for a few minutes because my ears will feel pressure and full again. It is like I have to use this device 24/7. Month 12, It is now June 2015 .. I am still suffering. I had a hearing test done 4 months ago and found out that I lost 10d in my left ear. I wanted to cry. Why? Because I am already hearing impaired. I wear hearing aids in both ears. I now have anxiety and will probably have a breakdown soon because no one will help me. Two weeks ago, I am hearing humming in my right ear. It is very upsetting and annoying. It won't go away either. The popping in my left ear only happens when I am laying down, sleeping. It goes away when I get up. All day, everyday, I have fullness, pressure in both ears and now I have a humming nose in my right ear. I went back to my GP who referred me to a second ENT. I have no idea how long I will be waiting .... I am only 24 years old, female. I have no idea what to do anymore. I also have acid reflux my whole life. I don't know what is going on
    • Tympanic
      Tympanic eyesonfire

      Posted

      eyesonfire,

        I am empathize with your situation. My experience with this condition is that no one person experiences exactly the same symptoms. In my case, I long for my ears to pop. That is the only time when relief fully comes. I perform the valsalva maneuver to pop them.

        Do you have negative or positive pressure in your middle ear? I believe I have negative pressure. This is where the pressure in my middle ear is less than that of the external environment and my tympanic membrane is pulled inward. If you do not know, you can ask one of your doctors. Knowing this will bring you one giant step closer to solving this problem.

        Also, what nasal sprays did you try? I have been using Flunisolide, although it does not work very well.

        It is hard to learn that "advanced" modern medicine does not have a good cure for this problem. I am working on obtaining employment in otolaryngology research, in hopes of developing a cure.

        As for now, I continue to do things such as the valsalva maneuver, neck massages, nasal irrigation, elimination diets, exercise, and relaxation techniques. I wish you the best and hope things begin to improve, soon. I was on the road towards clinical research when my ETD got worse. I promised myself that I would get over it. I believe the best way to do that, and make a living, is get involved in clinical research that targets it.

        Whatever you do, don't loose hope. Please keep us updated.

    • eyesonfire
      eyesonfire Tympanic

      Posted

      I have no idea if it is negative or positive pressure. I don't know the difference. No one is helping me. They keep telling me that my ears are fine and that it must be the inner ear. I'm like okay ... well please help me? Do something .... I am waiting for my second ENT referral. I have tried 3 cortisteriod sprays. Right now, I am on budesonide spray mixed with something else .. Orti something ... I am not sure. I don't know what is wrong with me because no one can tell me. I could have TMJ. My ear pops everytime I move my mouth/jaw. My symptoms are getting worse too. I pray and hope that I recover soon. Thank you .. Keep me updated!
    • Tympanic
      Tympanic eyesonfire

      Posted

      Acid reflux may be a major factor in the ear pressure problem. I encourage you to target and fix the acid reflux as much as you can and then see how that affects your ears. All the acid and gas, produced by the acid, is certainly rising into the eustachian tubes and other cavities. I also recommend not using corticosteroid sprays, at least not too much. They do not seem to help much and they can weaken the immune system, among other systems. Try using anti-inflammatory herbs, such as turmeric, cinnamon, cloves, etc... Keep in mind, I am not a professional doctor and am really just a guy suffering from ETD. So, if what I suggest strongly contradicts your doctors advice, definitely follow your docotors sensible advice

      As for negative vs. positive, I encourage you to find out from the ENT, if and when you next see them. To me, it helps to know for when I try to relieve the pressure. I believe that the more I "know" about and am "aware" of the physicality and dyanamics of my problems, the better equipped I am to fix them. Also, one reason for why I began this discussion is to gather some data regarding the specifics of people with ETD, as I progress in my research on the subject.

    • eyesonfire
      eyesonfire Tympanic

      Posted

      I will talk to my doctor about acid reflux next time I see her which won't be until August ..... Le sigh. I just got my referral from the second ent and I have to wait until end of July. Very sad. I was told use to my corticosteriod spray twice a day for two weeks. It seems to help pop my left ear since I never could before. I am not sure if this is TMJ related ... The way I pop my ears is opening my mouth and make a sound and it pops everytime. I did see an ENT last year and he was very rude and did not help me. I hope this one will .. I already had acid reflux problems my whole life by the way ... I am on 60mg of prevacid twice a day. This popping, humming, pressure in my ears started last June. I am trying to stay positive and hope to recover soon. Thanks and keep me updated!
    • joshs
      joshs eyesonfire

      Posted

      My ent says acid reflux can cause etd fwiw.

      I never really had much insight into how health care works in the UK. So you have to wait months at a time for referrals and appointments? I do believe that all should be able to receive health care but that lack of choice sounds scary.

      Can you pay on your own and see a specialist of choosing?

    • eyesonfire
      eyesonfire joshs

      Posted

      I live in canada so we have free healthcare. My GP referred me to a second ent and the earliest appointment they have is end of July. I have to pay gas to drive ... because we don't have any ents where I live so this will be a 2 hour drive to see an ent. So I have to wait .. sadly. I will ask about the acid reflux. I hope that I will get better soon .. Super depressing. Thanks and keep me updated
    • Tympanic
      Tympanic eyesonfire

      Posted

      Sinus rinsing may help you. Traditionally it's done with a neti pot, although there are now squeeze bottles that irrigate the sinuses more effectively. The sodium chloride and sodium bicarbonate mixtures that are included with them are necessary to match the pH of the sinuses. Since acid reflux is an issue, rinsing out the sinuses may be helpful. I have found it best to do it, at most, every other day, since more than that can dry out the sinuses. As always, ask your doctor before following any of my advice.
    • eyesonfire
      eyesonfire Tympanic

      Posted

      Morning, I did a test today ... When I woke up, I decided not to move or open my mouth or talk. I noticed that I rarely had any ear pressure and didn't feel the need to pop my ears. Does this mean something? I think everyone can relate this .. When you go to sleep, all your problems goes away and you don't feel pain or anything. Well after sleeping for 8 hours and waking up, I don't have much ear pressure until later in the morning and it goes on all day until I go back to sleep. BUT when I am sleeping, my left ear does make a popping sound non stop until I get up from the bed but I learned to ignore that since it has been a year. If I want to see my doctor, I have to wait two weeks. Until then, I'll have to wait and suffer. But hey, I've been waiting and suffering for 13 months now .. NO BIG DEAL. Have a good day ... Keep me updated! Thanks
    • joshs
      joshs eyesonfire

      Posted

      I've been trying the same thing, ie trying to 'work' my ears/tubes less. Not trying to pop or clear them as often and I definitely think it helps. Very hard habit to break though.
    • eyesonfire
      eyesonfire Tympanic

      Posted

      I just saw my family doctor today. I have been referred to 3 specialists. I hope I recover soon .... She prescribed me another nasal spray which is avamys. Once a day with 5 refills. I still have to wait another month to see an ent. She looked inside my ears and said right eardrum is pushed out a little bit. My left ear looks okay. Not sure what this means ..... She thinks tubes is the only solution but I don't like this idea. I already have hearing loss and I will not risk anymore. I also have acid reflux and she thinks it might be the problem for my ears. I will see a gastro and urologist for this. I am not sure what else to do. A month ago, the humming/squealing noise started in my right ear and hasn't stopped since which is upsetting. Anything else I should do? Anything advice? Any opinions? Thanks. Keep us updated and hopefully we all recover soon. I just want to feel normal again!!!
    • Tympanic
      Tympanic eyesonfire

      Posted

      I'm glad that you will be seeing some specialists. It sounds like your medical team is on the right track, slowly but surely. I have found the University of Pittsburg Medical Center to be involved in the most research on ETD of all institutions in the US. If need be, they could be a good place to get diagnosis and treatment.
    • eyesonfire
      eyesonfire Tympanic

      Posted

      Me too. Wish this was done earlier, sooner, months ago. I hope it is not too late for anything. But I do appreciate my family doctor trying to help me anyway she can. I still have to wait another 4 weeks to see an ent and that is a 2 hour drive ... Hope it won't be a waste of time again. She is going to give another ent a phone call for advice so I hope she really hope she does and follows up. Not sure how long I have to wait for the gastro and urologist but hopefully not too long ... but who knows, maybe it is acid reflux after all ... I like to know soon! I think we all like a proper diagnose so we can understand better and heal better and recover soon. So right now, I'll be using the avamys nasal spray once a day since I have five refills. Can someone explain what it is supposed to do ..... I think she said to equalize the pressure? Because I am not sure if it is even helping me since all my symptoms are here which is upsetting. I was able to handle this until the humming/squealing sound came along a month ago in my right ear and hasn't gone away since which is giving me a headache and anxiety. my world was silence and not anymore now. Now I am using the nasal spray and just basically waiting to hear from the specialists. Keep us updated and hopefully we all recover soon. Prayers for me and prayers for all of us! PS: I don't live in usa so it would be a long drive and $$$$ sadly. I hope the specialists I see can help me.
    • joshs
      joshs eyesonfire

      Posted

      Just thought I'd add some related updates on my end. Was recommended to get a 2nd opinion from another ENT. He straight up told me he was observing constantly trying to pop my ears and that I must stop as I was just overworking the muscles which could cause the fullness feeling.

      Second I have started getting treatments for TMJ and if suspected I highly recommend you look up some info on a treatment called Disclusion Time Reduciton. Look for some videos on youtube, specifically from dr nick yannios and dr ben sutter, especially the latter for related ear issues. I've started getting this treatment (the doctor I'm seeing has me do some physical therapy before getting the adjustment) and it is making a big difference for me. I never realized how much tension I had in the jaw muscles, which is directly connected to the Eustachian tube.

    • tessa35833
      tessa35833 joshs

      Posted

      Hi, that's very interesting to me too, Joshs, as I have been wondering whether my tmj and tension in jaw and neck could be contributing to my eustachian tube problems.  Let us know how you get on!  I am going to look at the videos you've mentioned, and seek some help from this angle too.  Good luck!
    • eyesonfire
      eyesonfire Tympanic

      Posted

      Saw a second ent today. Drove two hours to see him for nothing .... again. Told me to live with it, nothing he can do. No advice. Said it was eusthasian dysfunction tube so he thinks and told me he can't help. No cure. No treatment. I was like k .... My tinnitus started two months ago and he's like I have no explanation for that. If you're having hearing loss, go get a cochlear implant? I'm like uh no ... I will not? How will that relieve my symptoms. I'm so upset. I actually had to ask him if he can do a nasal scope and he was like saying why? I said ... Just to check? So he did it and say everything looks fine. Kept saying my ears look fine. I asked for an MRI and he said why? I'm like .... And he said I will look into it. I feel like crying. I wish I knew what to do. I still have no answers today. Waste of time and money. Going to have to keep researching on my own
    • Tympanic
      Tympanic eyesonfire

      Posted

      It is discouraging to not get any real help from doctors. I hope you find some answers in your research. I continue to work towards a career in the field. I believe that most doctors do not really know what is going on with ETD, partly due to how they are trained and partly due to where the money is. This disease certainly is a mystery that those without it seem to ignore and those with it are desperate to solve.
    • margaret53068
      margaret53068 joshs

      Posted

      I have been suffering since January in a very bad way.  I have worked out cutting out most of dairy products help by stopping the mucus build up.  Also  I hold one nostril in and blow out of the other one almost as if I want to blow a balloon up.  Then swop sides.  Keep doing this a few times a week after about 3months it seems to have some positive impact.  The full and blocked feeling is not there all the time.  Try this and see if it has any relief.  It's not an instant thing so have some patience and hopefully it might give some relief to you as well
    • shannon85303
      shannon85303 eyesonfire

      Posted

      Hey! How's everyting going with you? I HOPE BETTER??? I am ALSO a Canadian suffering from ETD (1 ear, 5 years now) and it would be really nice to chat with another Canadian since it's different and even more difficult it seems, for us trying to find help up here in Canada with this issue! I am a 33 year old female. It's been a fairly torturous 5 years, I would do almost anything at this point to make it better and I feel like my doctors here (family doc and ENT which took me forever to even get a referral for) have really don't nothing and made me feel like this issue is "no big deal" while it is literally ruining my life. I went to see Dr. Brian Weeks in San Diego last month which was very expensive, and he was amazing. He thinks I would be a candidate for the balloon dilation surgery which was SO wonderful to hear, but there is no way I can afford it. I am currently reseaching doctors in Canada that do it. Where do you live? I live in BC. Would love to chat further and hear how you are doing. I hope you have found some answers and are feeling better!!!
    • Scocar
      Scocar shannon85303

      Posted

      Hi Shannon. Any luck finding Doctor's doing the procedure? I'm in Ontario. I've had ETD for a year and 5 months now. Please let me know. Thanks, Scott

    • cindy90411
      cindy90411 shannon85303

      Posted

      Hi Shannon, Did you find anyone in Canada to do the dilation surgery? How much was the procedure with Dr. Weeks?
    • Scocar
      Scocar cindy90411

      Posted

      Hi Cindy. My name is Scott. There is only 1 doctor in Canada  that performs the surgery. He is Dr. Jack Kolander in Oakville Ontario. I have an appointment in April to see him. The surgery is NOT covered by OHIP, and the cost is appox $3,000-$4,000. 
    • cindy90411
      cindy90411 Scocar

      Posted

      Hi Scott, Through on-line research I found Dr. Kolander in Oakville. I spoke with the receptionist this morning and she said once I get my referral to them it's a 6 month waiting list...damn. They told me today that it's $3,000 for one ear and $4,500 for both. At this point I'd pay anything. I'm going to talk with Dr. Weeks office in San Diego and find out what the process is like...he's done far more procedures and I feel if I went to see him they would do thorough testing so I could at least find out what I have...my ENT in Canada says that my eustachian tubes are fine, but he wouldn't "be surprised if I still had ETD". It's so bad right now I can't hear out of my left ear since having the flu, and my tinnitus sounds. I had pulsatile tinnitus in my left ear prior to the blockage, but it didn't really bother me...I'm really afraid this won't clear up because of my preexisting condition...I'm a bit nauseous and dizzy too. I'm trying to find reviews of people that have had the procedure my Dr. Kolander but can't find any. Do you have this issues?

    • cindy90411
      cindy90411 Scocar

      Posted

      Also, Dr. Kolander gets really mixed reviews, but can't find any for this exact procedure. I wonder if OHIP would cover part of the cost in the States??

    • Scocar
      Scocar cindy90411

      Posted

      Hi Cindy. I got my referral from my doctor about two weeks ago, and heart from Dr. Kolander that my initial assessment is in April but I am on a waiting list. I've been suffering for over two years now so what is a couple months wait I figure.  I believe I will need both ears done, but the right is much worse than the left. Yes I have your symptoms too, as well as: my ear feels full on the time, my neck is really sire, my ear throbs from pressure, and sinus issues. I have seen 4 ENT's now and all they have done is all diagnose me with ETD, and medicate me. Finally the 4th one told me about Dr. Kolander. I know a few people who have seen him and said he was amazing as well as his staff. Where are you located? I'm in Ontario about 40 minutes from Oakville, so I'm lucky. I was considering going to the U.S. a one point. I look forward to your reply. 

    • cindy90411
      cindy90411 Scocar

      Posted

      Hi Scocar, I live in the west end of Toronto, so pretty close to Oakville. I went to my GP today and got a referral to Dr. Kolander. I also went to my ENT in Scarborough...a wonderful doctor, and he could see tons of fluid in my ear. I have moderate hearing loss but he said it was conductive and would come back, but could take many months. I can't use steroids due to an addiction to topical steroids so if I use them I end up with a full body rash that is horrendous. He's recommended a tube in that ear and I think I'm going to go for it. I research too much online and get scared, but I'm hearing white noise constantly and my ET aren't draining. My inner ears are constantly bathed in fluid and have been for over 20 years. I have pulsatile tinnitus in that ear and now I can't hear. I was thinking of going to see Dr. Weeks in San Diego but it's hugely expensive and my doctor today said it's experimental and no guarantees my eustachian tubes will stay open...imagine paying $15,000US only to have them close again! At least Dr. Kolander is $3,000 to $4,500...it's money but much more feasible. I really think all my problems are from allergies so started allergy shots almost a year ago, but haven't been on my maintenance dose for long enough to feel the benefits. It's a tough condition to live with...since getting the flu it's been really challenging. Nice chatting!

    • cindy90411
      cindy90411 Scocar

      Posted

      Hey Scocar, I just got my referral to Dr. Kolander! A long wait, not till June. I mentioned him to my ENT and he knew him but considers the procedure experiment...says it's experimental in the States too. I was about to have a tube inserted but decided not to do it. Have heard a lot of negative stuff about tubes...would rather try this first. I'm going to try and get on the cancellation list too. Do you know if they are able to drain the fluid when they do the procedure, or do they hope it drains after inserting the balloon? 

    • Scocar
      Scocar cindy90411

      Posted

      Hi Cindy. My name is Scott. I had the tubes and they fell out after a month. I hope they do drain the fluid before the procedure. Yes it is considered experimental I guess that is why OHIP won't cover it. It is 87% effective though, and at this point I am willing to try anything!!

      .

    • cindy90411
      cindy90411 Scocar

      Posted

      Hi Scott, Wow I didn't know it was 87% effective...that's great. Did you feel relief after the tubes went in? Once the tubes fell out did all your symptoms return? Do/did you have tinnitus, and if so did the tubes resolve it? I have a white noise from the blockage (doctor says this is typical and will go...not so sure) and pulsatile tinnitus prior to that. 

      Also, do you know much about the doctor and his reputation when it comes to this procedure? Do you know where he trained for this? I know Dr. Weeks is highly regarded, but don't know much about this doctor...mixed reviews for standard ENT care. My ENT knows of him and was surprised when I said he was doing this procedure.

    • cindy90411
      cindy90411 Scocar

      Posted

      Hi Scott, Did you see Dr. Kolander yet? I remembered your appointment was in April. Curious because I see him in June. Maybe you're still waiting...would love to hear how it goes/went. Thanks!

    • cindy90411
      cindy90411 Scocar

      Posted

      Hi Scott, Sorry to bother you again, but very curious about your appt with Dr. Kolender. I see him next month. Would love to know if you're going ahead with the procedure. Hope it went well!

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