Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 I was told my cholesteatoma was probably formed because my eustachian tube is not functioning properly, causing negative pressure in my ear. This probably caused a retraction pocket and cholesteatoma. I had surgery over a year and a half ago but still have the plugged up feeling. Went to a new doctor because we moved and she said there is nothing she can do for it. My concern to her was that if it still isn't fixed, then will the cholesteatoma come back and she said yes it can and that is why I am being monitored. She suggested I go to an allergist and see if allergies are causing the disfunction. Has anyone else had this problem, and did you find any solution for eustachian tube dysfunction??? This is causing me problems hearing- I am trialing hearing aids and cannot hear unless I pop my ear every 30 seconds! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 Try taking claritin. Sometimes this will help. Try for a month before giving up. Give it time to work. Wood On Tue, Apr 19, 2011 at 7:14 AM, seftonmichelle <seftonmichelle@...> wrote: I was told my cholesteatoma was probably formed because my eustachian tube is not functioning properly, causing negative pressure in my ear. This probably caused a retraction pocket and cholesteatoma. I had surgery over a year and a half ago but still have the plugged up feeling. Went to a new doctor because we moved and she said there is nothing she can do for it. My concern to her was that if it still isn't fixed, then will the cholesteatoma come back and she said yes it can and that is why I am being monitored. She suggested I go to an allergist and see if allergies are causing the disfunction. Has anyone else had this problem, and did you find any solution for eustachian tube dysfunction??? This is causing me problems hearing- I am trialing hearing aids and cannot hear unless I pop my ear every 30 seconds! -- Wood Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 I've pretty much been told the same thing only in addition to that I have sensorineural hearing loss that they can't do much about either. I do notice that I have more trouble/discomfort when my nose is the least bit plugged up/irritated. Right now I'd pay good money for a " Cholesteatoma Sucks! " t-shirt. Perhaps bright green with gold lettering .... My next follow-up visit is Thursday morning. Matt seftonmichelle wrote: > > I was told my cholesteatoma was probably formed because my eustachian > tube is not functioning properly, causing negative pressure in my ear. > This probably caused a retraction pocket and cholesteatoma. I had > surgery over a year and a half ago but still have the plugged up > feeling. Went to a new doctor because we moved and she said there is > nothing she can do for it. My concern to her was that if it still > isn't fixed, then will the cholesteatoma come back and she said yes it > can and that is why I am being monitored. She suggested I go to an > allergist and see if allergies are causing the disfunction. Has anyone > else had this problem, and did you find any solution for eustachian > tube dysfunction??? This is causing me problems hearing- I am trialing > hearing aids and cannot hear unless I pop my ear every 30 seconds! > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 I also have eustachian tube dysfunction. I was told to blow my nose by holding it to gently pop my ears and I do this often. I would rather do that than keep having surgeries. That being said...I am having surgery again tomorrow for a new growth in the past 7 months. Like Matt...I want a t-shirt as well. I would get different colors for each of my kids too. I hadn't heard about allergies though so that might be something to look into. It wouldn't hurt right? JenniOn Tue, Apr 19, 2011 at 7:14 AM, seftonmichelle <seftonmichelle@...> wrote: I was told my cholesteatoma was probably formed because my eustachian tube is not functioning properly, causing negative pressure in my ear. This probably caused a retraction pocket and cholesteatoma. I had surgery over a year and a half ago but still have the plugged up feeling. Went to a new doctor because we moved and she said there is nothing she can do for it. My concern to her was that if it still isn't fixed, then will the cholesteatoma come back and she said yes it can and that is why I am being monitored. She suggested I go to an allergist and see if allergies are causing the disfunction. Has anyone else had this problem, and did you find any solution for eustachian tube dysfunction??? This is causing me problems hearing- I am trialing hearing aids and cannot hear unless I pop my ear every 30 seconds! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 I've had soem luck with Astepro, it's a nasal spray my ear surgeon gave me. I also see a sinus/allergy guy because to make sure that contributing to my problem. It worth visit. Kathy > > I was told my cholesteatoma was probably formed because my eustachian tube is not functioning properly, causing negative pressure in my ear. This probably caused a retraction pocket and cholesteatoma. I had surgery over a year and a half ago but still have the plugged up feeling. Went to a new doctor because we moved and she said there is nothing she can do for it. My concern to her was that if it still isn't fixed, then will the cholesteatoma come back and she said yes it can and that is why I am being monitored. She suggested I go to an allergist and see if allergies are causing the disfunction. Has anyone else had this problem, and did you find any solution for eustachian tube dysfunction??? This is causing me problems hearing- I am trialing hearing aids and cannot hear unless I pop my ear every 30 seconds! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 Matt,I love the t-shirt idea! I also have severe sensoneural hearing loss but the doctor I just saw (we moved) recommended hearing aids and said I was an excellent candidate for them. Well that would be true if I could keep my ear unclogged. I asked her if we don't fix the ED that probably caused the c-toma then how do you know it wont' come back. And she said that is why I am monitoring you to see if it does come back. She said there is nothing she can do and referred me to an allergist. You would think being an otologist/neurotologist that she would be able to do something. Just very frustrated as we all are. Thanks for your response!--- On Tue, 4/19/11, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 thanks ! I am currently taking allegra, and will see what happens. I was told my cholesteatoma was probably formed because my eustachian tube is not functioning properly, causing negative pressure in my ear. This probably caused a retraction pocket and cholesteatoma. I had surgery over a year and a half ago but still have the plugged up feeling. Went to a new doctor because we moved and she said there is nothing she can do for it. My concern to her was that if it still isn't fixed, then will the cholesteatoma come back and she said yes it can and that is why I am being monitored. She suggested I go to an allergist and see if allergies are causing the disfunction. Has anyone else had this problem, and did you find any solution for eustachian tube dysfunction??? This is causing me problems hearing- I am trialing hearing aids and cannot hear unless I pop my ear every 30 seconds! -- Wood Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2011 Report Share Posted April 19, 2011 and Matt, I love the shirt idea too! Or "I survived Cholesteatoma!" I too suffer from ET dysfunction, seems like many of us "survivors" do. I'm on an allergy regimen as well, and do the ear pop thing by gently blowing while holding my ear. Occasionally if neither of those work, I take a decongestant which usually solves the problem.I have a hard time believing with all the advances, prothetics, tubes, etc. that someone as not come up with a surgery or other solution to correct eustachian tube dysfunction. Or some sort of stint or something they could insert to keep it open???? Seems like if they could fix ET dysfunction, there would be a lot fewer c-toma surgeries.Sent on the Sprint® Now Network from my BlackBerry®From: Sefton <seftonmichelle@...>Sender: cholesteatoma Date: Tue, 19 Apr 2011 15:52:37 -0700 (PDT)<cholesteatoma >Reply cholesteatoma Subject: Re: ETD and Cholesteatoma Matt,I love the t-shirt idea! I also have severe sensoneural hearing loss but the doctor I just saw (we moved) recommended hearing aids and said I was an excellent candidate for them. Well that would be true if I could keep my ear unclogged. I asked her if we don't fix the ED that probably caused the c-toma then how do you know it wont' come back. And she said that is why I am monitoring you to see if it does come back. She said there is nothing she can do and referred me to an allergist. You would think being an otologist/neurotologist that she would be able to do something. Just very frustrated as we all are. Thanks for your response!--- On Tue, 4/19/11, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 , I too suffered (still suffer) from ETD. I had CWD surgery in April 2007, and can happily say that this has been the only surgery!! Because of the ETD, I am still required to see my neuro-otologist every 6 months now, which previously was 3 months. Since I have been on a daily routine of inflating my ears, this has debilitated the chance of reoccurrence. Here is what I have posted previously: I inflate my ears 2-3 times a day using the Politzer technique, http://www.pediatricsupersite.com/view.aspx?rid=35966Here's the technique I perform as written by the Pediatric ENT that wrote the article:"Third, the bulb syringe is seated firmly against one nasal aperture and the other nostril is gently pinched closed by the index finger tip not holding the bulb syringe. The final step is when the patient is commanded to swallow a bolus of water and synchronous to deglutition, the bulb syringe is gently squeezed. If the Politzer procedure is performed correctly, some of the bolus of air released into the nasal passage enters and traverses both Eustachian tubes and exits into both middle ear clefts. The act of deglutition causes activation of the tensor palatini muscle and this opens the mouth of the Eustachian tube allowing the bolus of air to enter. A quick look with the pneumatic otoscope will allow the examiner to tell if the eardrum remains in the retracted position or reverts to the normal neutral position. At the same time, the patient is queried if he or she felt discomfort when air entered one or both middle ear clefts. ative patients can practice this technique and relieve the effects of negative middle ear pressure on descent during air travel or after coming up from deep water diving." For the past year I've actively swam at both indoor and outdoor pools and the ocean. I am not a diver, so do not have any information on this aspect as a result of CWD. Post swimming I make sure that I flush any residual water from the ear by shaking it out and using Swim Ear solution, http://www.drugstore.com/qxp12443_333181_sespider/swim_ear/ear_drying_aid.htm. It contains Isopropyl Alcohol (95%), which mixes well with water and dries quickly. I just use 4-5 drops, then inflate to help drain and open u-tube. Hope this helps, Nate From: seftonmichelle <seftonmichelle@...>cholesteatoma Sent: Tue, April 19, 2011 10:14:14 AMSubject: ETD and Cholesteatoma I was told my cholesteatoma was probably formed because my eustachian tube is not functioning properly, causing negative pressure in my ear. This probably caused a retraction pocket and cholesteatoma. I had surgery over a year and a half ago but still have the plugged up feeling. Went to a new doctor because we moved and she said there is nothing she can do for it. My concern to her was that if it still isn't fixed, then will the cholesteatoma come back and she said yes it can and that is why I am being monitored. She suggested I go to an allergist and see if allergies are causing the disfunction. Has anyone else had this problem, and did you find any solution for eustachian tube dysfunction??? This is causing me problems hearing- I am trialing hearing aids and cannot hear unless I pop my ear every 30 seconds! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 and Matt,I was just saying the same thing! In this day and age, why can't they do something to fix ED?? I asked my doctor why they can't put a PE tube in there and she said that after c-toma surgery that could cause problems. Seems to me, doing nothing is going to cause problems too! My ear plugged up 4 years ago and has never unclogged! When I had the surgery they thought it was the c-toma causing me that feeling but after surgery it feels the same. I pop my ears about 500 times a day I swear! But the clearness only lasts about a minute or less. Did you go to an allergist? Who prescribes your allergy regimen? My doctor said I should see an allergist. I have been taking over the counter allergy/decongestant because I am desperate!! I can't tell if it is helping or not. Guess it can't hurt to make yet another appointment. I just feel like everyone is putting me off- there is nothing we can do! I'm sure you both know the feeling well.Take care!From: Teague <kbteague@...>Subject: Re: ETD and Cholesteatomacholesteatoma Date: Tuesday, April 19, 2011, 11:22 PM and Matt, I love the shirt idea too! Or "I survived Cholesteatoma!" I too suffer from ET dysfunction, seems like many of us "survivors" do. I'm on an allergy regimen as well, and do the ear pop thing by gently blowing while holding my ear. Occasionally if neither of those work, I take a decongestant which usually solves the problem.I have a hard time believing with all the advances, prothetics, tubes, etc. that someone as not come up with a surgery or other solution to correct eustachian tube dysfunction. Or some sort of stint or something they could insert to keep it open???? Seems like if they could fix ET dysfunction, there would be a lot fewer c-toma surgeries.Sent on the Sprint® Now Network from my BlackBerry®From: Sefton <seftonmichelle@...> Sender: cholesteatoma Date: Tue, 19 Apr 2011 15:52:37 -0700 (PDT)<cholesteatoma >Reply cholesteatoma Subject: Re: ETD and Cholesteatoma Matt,I love the t-shirt idea! I also have severe sensoneural hearing loss but the doctor I just saw (we moved) recommended hearing aids and said I was an excellent candidate for them. Well that would be true if I could keep my ear unclogged. I asked her if we don't fix the ED that probably caused the c-toma then how do you know it wont' come back. And she said that is why I am monitoring you to see if it does come back. She said there is nothing she can do and referred me to an allergist. You would think being an otologist/neurotologist that she would be able to do something. Just very frustrated as we all are. Thanks for your response!--- On Tue, 4/19/11, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 ,My ENT has an allergist in the office. Between my ENT, neurotologist and the allergist, they originally had me on 4 different types of allergy meds: astepro, flonase,(both nasal sprays) prescription zyrtec, and shots/sublingual from the allergist. I stopped the sublingual only cause of cost and couldn't tell the difference. Most the time the allergy meds work-but occassionally it seems nothing works. So, yes I know how you feel-it is extrememly frustrating!! I've found the Aleve D helps sometimes when all else fails! This is one of those weeks. Maybe that way of "popping" ears from will work. Like you, I can pop them and a few minutes later right back to the fullness and some pain too when it is really bad!We can just keep praying for a solution! TeagueSent on the Sprint® Now Network from my BlackBerry®From: Sefton <seftonmichelle@...>Sender: cholesteatoma Date: Wed, 20 Apr 2011 05:36:11 -0700 (PDT)<cholesteatoma >Reply cholesteatoma Subject: Re: ETD and Cholesteatoma and Matt,I was just saying the same thing! In this day and age, why can't they do something to fix ED?? I asked my doctor why they can't put a PE tube in there and she said that after c-toma surgery that could cause problems. Seems to me, doing nothing is going to cause problems too! My ear plugged up 4 years ago and has never unclogged! When I had the surgery they thought it was the c-toma causing me that feeling but after surgery it feels the same. I pop my ears about 500 times a day I swear! But the clearness only lasts about a minute or less. Did you go to an allergist? Who prescribes your allergy regimen? My doctor said I should see an allergist. I have been taking over the counter allergy/decongestant because I am desperate!! I can't tell if it is helpingor not. Guess it can't hurt to make yet another appointment. I just feel like everyone is putting me off- there is nothing we can do! I'm sure you both know the feeling well.Take care!From: Teague <kbteague@...>Subject: Re: ETD and Cholesteatomacholesteatoma Date: Tuesday, April 19, 2011, 11:22 PM and Matt, I love the shirt idea too! Or "I survived Cholesteatoma!" I too suffer from ET dysfunction, seems like many of us "survivors" do. I'm on an allergy regimen as well, and do the ear pop thing by gently blowing while holding my ear. Occasionally if neither of those work, I take a decongestant which usually solves the problem.I have a hard time believing with all the advances, prothetics, tubes, etc. that someone as not come up with a surgery or other solution to correct eustachian tube dysfunction. Or some sort of stint or something they could insert to keep it open???? Seems like if they could fix ET dysfunction, there would be a lot fewer c-toma surgeries.Sent on the Sprint® Now Network from my BlackBerry®From: Sefton <seftonmichelle@...>Sender: cholesteatoma Date: Tue, 19 Apr 2011 15:52:37 -0700 (PDT)<cholesteatoma >Reply cholesteatoma Subject: Re: ETD and Cholesteatoma Matt,I love the t-shirt idea! I also have severe sensoneural hearing loss but the doctor I just saw (we moved) recommended hearing aids and said I was an excellent candidate for them. Well that would be true if I could keep my ear unclogged. I asked her if we don't fix the ED that probably caused the c-toma then how do you know it wont' come back. And she said that is why I am monitoring you to see if it does come back. She said there is nothing she can do and referred me to an allergist. You would think being an otologist/neurotologist that she would be able to do something. Just very frustrated as we all are. Thanks for your response!--- On Tue, 4/19/11, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 ,At least your doctors are trying to treat you. I keep hearing do nothing, just pop your ears. Well that got me a big fat cholesteatoma, surgery and severe hearing loss! Now the problem still exists and I want to try to do something about it. The doctors here don't seem to talk to one another. The otologist recommended hearing aids which I am trying right now, but you would think the audiologist and otologist would talk to one another, but NO! The otologist said there is nothing she can do and I just need to be closely monitored to make sure it doesn't come back.Thanks for your responses- I made an appointment with the allergist so we will see how that goes. I have never been diagnosed with allergies but do have some sinus problems.Take care!From: Teague <kbteague@...>Subject: Re: ETD and Cholesteatomacholesteatoma Date: Tuesday, April 19, 2011, 11:22 PM and Matt, I love the shirt idea too! Or "I survived Cholesteatoma!" I too suffer from ET dysfunction, seems like many of us "survivors" do. I'm on an allergy regimen as well, and do the ear pop thing by gently blowing while holding my ear. Occasionally if neither of those work, I take a decongestant which usually solves the problem.I have a hard time believing with all the advances, prothetics, tubes, etc. that someone as not come up with a surgery or other solution to correct eustachian tube dysfunction. Or some sort of stint or something they could insert to keep it open???? Seems like if they could fix ET dysfunction, there would be a lot fewer c-toma surgeries.Sent on the Sprint® Now Network from my BlackBerry®From: Sefton <seftonmichelle@...> Sender: cholesteatoma Date: Tue, 19 Apr 2011 15:52:37 -0700 (PDT)<cholesteatoma >Reply cholesteatoma Subject: Re: ETD and Cholesteatoma Matt,I love the t-shirt idea! I also have severe sensoneural hearing loss but the doctor I just saw (we moved) recommended hearing aids and said I was an excellent candidate for them. Well that would be true if I could keep my ear unclogged. I asked her if we don't fix the ED that probably caused the c-toma then how do you know it wont' come back. And she said that is why I am monitoring you to see if it does come back. She said there is nothing she can do and referred me to an allergist. You would think being an otologist/neurotologist that she would be able to do something. Just very frustrated as we all are. Thanks for your response!--- On Tue, 4/19/11, Quote Link to comment Share on other sites More sharing options...
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