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Old 09-11-2011, 10:34 AM   #1
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My Eustachian Tube Dysfunction

A brief history for me...

I've now had ETD for over 9 months. I began having mild ear issues for a few months prior to ETD. I became aware of a low level "diesel idling" tinnitus in my right ear back in October of 2010, followed by muscle spasm attacks in my right middle ear. The spasms were diagnosed as middle ear myoclonus while the tinnitus, I was told, was probably nerve damage or hearing loss, even though my hearing is still within normal range for that ear.

However, at this point, I was not having eustachian tube problems, at least that I was aware of...

That would change dramatically.

On December 18th, 2010 I was suffering from what seemed like a head cold (I had been having them non-stop that fall and winter), but I had to attend a family member's funeral. This meant two air flights in a day. Crying at the memorial service further congested me. While landing on the return flight, my ears, especially the right one, felt like they were going to explode. I got off the flight with blocked ears, and spent the next 48 days trying unsuccessfully to clear them. During this time of blocked ears, I took a long drive which required crossing several mountain passes, lots of elevation changes. I think it further hurt my ears, because within days of the drive, I was at urgent care with a raging double middle ear infection. I stupidly continued on to Disneyland, riding rides with blocked and infected ears, crossing more mountains both going and returning, etc.

At no time did any health expert tell me it was dangerous to fly or drive through mountains with blocked ears. Nobody ever mentioned barotrauma, ETD, or how the things I was doing might worsen my condition. All the rapid elevation changes I experienced during this short amount of time were most likely just compounding the problem. I feel like I fell through a knowledge gap in the healthcare system, and my ears are now suffering the consequences...

I drove home (crossing more mountains, etc.). This was now early January. Even after my ear infection cleared, I was convinced there was fluid in my ears, because they felt blocked. I was told by a doctor that there was no fluid...this was the first time ETD was ever discussed with me, and I was sent home with Flonase, a saline sinus rinse, and instructions to take sudafed and mucinex to clear my ears. I walked around with blocked and muffled hearing, feeling trapped in my own head.

Eventually, I used Afrin nasal spray to open my ears. This did work to unblock them, but the e-tubes were still sticking at random, etc, so the ETD persisted, though not as bad.

For the last 9 months, I've been going to doctors and other healthcare providers, looking for answers to my intermittent tinnitus and the feeling of random fullness or blocked ears. I can valsava and get ear through the e-tubes -- but the tubes are still not functioning well. They stick together and, I would guess, only open about 20% of the time they should be opening. I have to clear my ears repeatedly throughout the day, sometimes feeling compelled to clear them a few times every minute!

Unfortunately for me, I have gained voluntary control of the muscles that open and close the eustachian tubes inside my throat, and so now click the tubes compulsively throughout the day. I can force air through my e-tubes without anyone being able to notice, and I get into these spells where I do it over and over and over. It's something like an OCD tic, and I hate it! When feeling really poorly, I will do it to the point of soreness and exhaustion.

I will write more soon about things I've tried, what works/doesn't work for me, etc. I believe there's an answer to this problem. I started out with completely healthy ears, and the body will continue to try to heal itself and restore function as long as we live. And...there are promising new treatments on the horizon.

Last edited by Administrator; 10-26-2011 at 10:23 PM.

 
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Old 09-11-2011, 04:21 PM   #2
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Re: My Story of Eustachian Tube Dysfunction

Hello Everyone,

I've been reading the threads about eustachian tube dysfunction and just wanted to share my story. I can empathize what many of who you are going through this. For almost 7 months I've been dealing with pressure, some clogging, slight fullness and tinnitus in my right ear. It all started in late February when I noticed a beeping in my ear. I thought maybe it would go away on its own. However, it did not and within the course of 2 weeks, not only was there beeping but also buzzing and humming, along with pulsating pressure and slight fullness in the right ear.

In early to mid March of this year I went to my Primary Care Physician about these symptoms. He said he thought it was blocked congestion in the ear and gave me Flonase along with Prednisone to take for a couple weeks. There was no improvement in these symptoms. I then made an appointment with an ENT doctor. Although they couldn't see me until mid April. Mid April finally came around to see the doctor. When doing an examination, the ENT doctor found that I had an enlarge adenoid on the right side. He thought maybe due to the enlarged adenoid, fluid in the ear was not draining out properly, possibly leading the the right ear being "backed up." So the next month in May, I went through a thorough hearing test followed by an MRI.

Unfortunately, between the first ENT doctor appointment and hearing test and MRI, I caught a bad cold which aggrivated the symptoms in my right ear, causing my ears to be clogged for a month until mid May. When I had the hearing test in late May, the tympanogram reading indicated a problem with the eustachian tube. The MRI showed no signs of tumors in the ear. However, it indicated inflammation of the mastoid bone behind the right ear. I read that mastoid inflammation may result from an untreated ear infection. Due to these findings, the ENT doctor put me on 2 rounds of antibiotics. The antibiotics helped reduce some of the tinnitus for a brief time period and improved hearing in the right ear. However, the sensation of pressure still remained in the ear and I still have some bad days with humming, buzzing and/or beeping in my ear.

On a visit with the ENT doctor in early August, the doctor tested me for allergies which found that I am allergic to dust and grass pollen. The doctor prescribed for me a month's worth of Omnaris nasal spray and to take Allegra each day. The doctor stated that if this nasal spray does not help that I may have to get a tube in my ear. My next appointment with the ENT doctor was in September.

Well, the Omnaris was not helping. In fact the left ear has been starting to act up with pressure and fullness, at times. When the left ear has acted up, the tinnitus in my right ear temporarily goes way for about 24 hours. That seems so strange to me. Also, when I'm having the pressure and fullness in my left ear, it clears up in a couple days, whereas the symptoms in my right ear has been ongoing. This is a very frustrating ordeal. I can deal with the slight fullness in my ear, but the pressure in the right ear is uncomfortable and the tinnitus can be emotionally overwhelming. Maybe, the draining system is probably working much better on the left side. I wish that were true of the right side. Maybe this is partly due to the enlarged right adenoid.

I recently had a follow up visit with the ENT doctor in about 4 days ago, where I explained that the Omnaris did not help with the ear. He prescribed one more nasal spray to try; Astepro with an antihistamine (sp) nasal spray. He asked that I try it for a couple weeks to see if there's any improvement. So far, I haven't noticed much difference using the Astepro. I think I may have to get tubes in my ears after all.

I don't want to have surgery on my ear. However, if a grommet tube may help, it may be worth pursuing. I'm wondering though if there is a genetic or hereditary component to some of these ear and eustachian tube problems. My twin brother had tubes put in his ears when he was 4 years old. I think it was because of chronic ear infections as a youngster. When I told my father about my current ear problems, he stated that when he gets a cold his ears remain full and clogged for a lengthy amount of time. This even occurs for him at times when he does not have a cold. This whole ordeal has left me with more questions than answers, unfortunately.

I will try to keep people posted on my right ear ordeal.

Last edited by moderator2; 09-12-2011 at 11:30 AM.

 
Old 09-12-2011, 11:27 AM   #3
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Re: My Story of Eustachian Tube Dysfunction

Hi Leah,

Sorry to hear you are going through this ordeal as well. Your symptoms sound almost dead-on like mine, even down to the ear that's being affected (my "bad" ear is the right ear, although left ear also has some symptoms of clogging/pressure, though it has so far never had any tinnitus).

My tinnitus also has a weird vibrating quality at times...like a physical buzzing that goes along with the sound I am hearing in the ear. This is VERY distressing to me...it's like I have a wasp stuck in my ear. No doctor has been able to explain why I would feel a physical sensation along with the sound of the tinnitus.

The latest nasal spray I am trying is astelin...the generic. I am not noticing a huge difference from that and the generic flonase I was on for months and months and months.

Other things...

I am researching allergy as well. I got tested a couple weeks ago...tested positive for mold allergy, and am waiting on blood tests for more info on possible other allergens. I am reading a book written by an ENT who found a link between middle ear infection and ear allergy (not sure I can put the name of book/doctor here). He has published many papers about this subject, but it's still not widely accepted by ENTs. Apparently the middle ear and eustachian tubes can be affected by allergy just as much as any other part of the body, especially since they are made of the same kind of mucosa as sinuses are. He calls the middle ear the "fifth sinus." He has had great luck treating his middle ear patients with immunology/shots to rid them of their ETD and associated chronic ear fluid and ear infections...he claims something like a 94% cure rate.

My health problem started last fall with what I thought was a cold that lasted for months on end. I would wake up with sore throats, drainage, etc. I think the development of a mold allergy masqueraded as this "cold" and may have eventually changed my e-tubes into mucus-making machines. (Not to be gross.) I guess it's not uncommon to develop an allergy when you move to an unfamiliar region of the country, but it can take time for the allergy to reach critical mass. For me, it's taken 6 years to get to the point where I'm struggling with daily symptoms. Right now, mold season is at its height, but unfortunately mold never really goes away in the Pacific Northwest, since we have mild winters, rare snow/frost. It takes freezing winter weather to drive mold into dormancy.

I did get a pe tube put in my right (bad) ear last month. It has helped somewhat. I still notice the constant crackling/sticking of my e-tubes, despite the pe tube doing a nice job keeping my middle ear space equalized. The upside is that it got rid of the sense of crazy pressure inside the middle ear space, which would get really bad with driving. And the recovery was very fast. So it was worth it just to have some relief, even if it hasn't actually cured me or completely rid me of symptoms. I can definitely tell the difference between my tubed ear and my left ear when I drive. Because it's helped so much with travel, I am going to probably go ahead and have a tube put in my less symptomatic ear. I hope this is the only set of tubes I will have to have, and that a better solution will arise between now and the time the tubes work their way back out of my eardrums.

Does anyone notice their symptoms change with the weather? I thought I was crazy, because my ears will block whenever a storm is coming in. But apparently that's when mold releases its spore load into the air, so...I'm not crazy, just having a reaction. That makes me really think that so much of this is inflammation from allergy.

My father also had ear problems, including moderate noise-related deafness and a bout of labyrinthitis that knocked him off his feet for a while. Unfortunately he has passed away, so I can't ask him if he experienced any of the problems I'm having. I do often wonder if that's why I would see my dad occasionally sitting around tugging on his earlobes. Perhaps he, too, suffered from ETD, but he wasn't one to complain aloud, so I will never know.

Last edited by moderator2; 09-12-2011 at 11:31 AM.

 
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Old 09-12-2011, 03:42 PM   #4
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Re: My Story of Eustachian Tube Dysfunction

Hi Jennifleck, thanks so much for starting this thread. I didn't realize how many peoples lives are affected by something so simple as ETD. My story is almost 4 yrs long, so i will try to condense it. My problem started as a bad smell, no other symptoms. I own a dog grooming salon and have groomed dogs for 26 yrs. I knew the smell, it was the smell dogs get in their infected ears, Pseudomonas Infection. I took this info w/me to my first ENT visit (that was the 1st of many looks i got like i was crazy, i'm sure you ALL know that look). I had FESS sinus surgery, but within 2 weeks the stench was back, along with this feeling of water in my head and pain directly behind my nose. I was told the surgery went perfect, so i can't have pain....a year and a half later i was finally diagnosed by a simple, in office mucus test with Pseudomonas Infection! I spent the next year and a half going to 31 diff drs trying to get rid of it. Infectious disease, neurologists, neuro-opthamologists, pain drs, ENT's, my gynecologist, naturopathic drs, chiropractors etc. I left so many drs office's crying hysterical. I had every test available, MRI's, CT scans, EEGs, sleep test, bone scan, body scan. I had nerve blocks in my face & neck, and was on very strong pain meds. Nothing helped. We were chasing the pain and all my symptoms. I kept asking, what is behind my nose that could be hurting so much? And why do i feel underwater all the time. No answer. I spent 90% of my life on the couch crying. I lost 35 lbs and became extremely anemic and suicidal. I hurt too much to even eat. No dr gave me any hope. I knew the first step was to get rid of the infection. Then see if i still had pain. After my 3rd round of IV antibiotics put me in the hospital for 4 days, my last ENT told me i had become his "guinea pig." He didn't know how to get rid of this infection. Luckily, i saw a dr on TV who was doing a new procedure for sinus infection. I flew to San Diego, had the surgery and my infection was gone. NO more stench!! But the pain/pressure was still there, along with "clicking" every time i swallowed like my head was full of water. I called my new dr and told him my symptoms. He said "that sounds like your eustachian tubes". Just like that-7 ENT's later i finally hear-Eustachian tubes. I googled it and there was a man with a fish bowl on his head. That was me! We tried sprays and forcing air into my tubes first. Then he told me about a new procedure that dilates your tubes and opens them up. He said it's very new, ins probably won't pay. I told him I would fly to China if i had to, to get my life back! My ins did pay. The minute i woke up, it was like someone had "popped" my head. I took a drink of water and my ears didn't click. I realized then, that my hearing had been impaired-i had just gotten used to it after 3 yrs of my tubes being stuck. I came home and was "me" again. My husband jokingly asked where my "off" button was! Unfortunately two weeks later i got a bad cold/cough and my tubes closed again. I am back on sprays. My dr is very positive they will open back up. But at least i know there is an answer so i'm not depressed anymore. I just e-mailed my dr asking him if my muscles that open and shut my tubes could have stopped working, since they weren't working for 3 yrs, and only had two weeks working before i got a cold and they closed up again. If i have to do it again, i will. It was simple and pain free and worked. My dr said they have only done a few hundred in the country, but no one has had to have it re-done, so that's positive. There is hope and new technology out there! Don't get discouraged!!

Last edited by dltt48; 09-12-2011 at 03:50 PM. Reason: spelling

 
Old 09-17-2011, 03:33 PM   #5
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Re: My Story of Eustachian Tube Dysfunction

Hi there, Jenni. Elsewhere, in another thread I think, you noted that among your ear symptoms is an itchiness. I have this too. I have a series of strange symptoms which have evolved, it seems, since the this all started for me in the spring. Though the pressure isn't as bad as it was, the stickiness and itchiness continue and my left ear gets this weird pressure behind it, near the mastoid, that just feels like my ear is being cradled in a numbing fluid. It's so bizarre. Still, what disturbs me most is the itch and the constant sticky, crunchy, crackling when I swallow or yawn. Went to ENT again last Friday, and though I haven't had any scans, audiology tests, tympanogram, and other diagnostic procedures come back normal. Only thing of note is that I show some bilateral high frequency loss.

I've never been prone to depression, and have been trying to stay positive this whole time (6 months now) that this will resolve. I did go running last Monday and Tuesday and it did help my symptoms (reduced the fullness). But it's been raining for the past 4 days and ears are getting really 'sticky' again.

I wish there was an answer to all this. I had intensive chemo last year, and finished adjuvant therapy this spring, and thought maybe that had something to do with it. Whatever the cause (ear infection or something else), I can tell you that this ETD, for me, has been way more debilitating than chemo ever was.

 
Old 09-18-2011, 10:59 AM   #6
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Re: My Story of Eustachian Tube Dysfunction

Hi Marie,

Sorry to hear it's still ongoing for you. I've actually had a few days of relative relief, despite the fact that the barometer has plummeted and it has gone from sunny to damp and drizzly weather. Usually rain or barometer dropping means my symptoms will flare. I think I may have finally found out why.

Last month I got tested for allergies, and finally got back my test results. I'm allergic to three common grass pollens and a very common, abundant form of mold. This kind of mold is found in dirt, leaf mulch, potting soil, cloth, leather, grass clippings, and wooded areas -- I live in the Pacific Northwest on the edge of a metro area, surrounded by fields and woods. Apparently we are in our "high season" right now for the mold, but it's present year-round. Anyhow, the kicker is that whenever the temperature drops and things become damp, apparently that is when the mold releases its spores into the air, millions upon millions of them. And the mold also releases spores at night. So all this summer, when I've been sleeping right under an open window, I've been bombarded by the very thing I'm allergic to... And then I wake up with a sore throat, mild cold symptoms, and clogged ears!

Since finding out I have these allergies, I've made a few changes. I don't sleep with my windows open, but instead sleep with the highest rated HEPA filter on the market running in my room nonstop. Supposedly it clears the air of pollen and mold spores at least 4 times an hour, so there shouldn't be a lot floating around there.

The other problem is that my work requires going into musty, damp areas several times a week. So I have been reluctantly wearing a paper mask when I have to do that.

Anyhow, what it all comes down to is...many of us with ongoing ETD could have an ear allergy. The middle ears and the eustachian tube are made up of the same mucosal material as the sinuses and the lungs. Some people's allergies hit the sinuses. Some have problems in the lungs leading to asthma-like symptoms. Some allergies are expressed through hives or a swelling throat. It all really depends on the individual person as to what "target" the allergen will hit.

I've found doctors who refuse to believe that an ear allergy can exist, but you can look up the information online and read the medical literature yourself, and it's quite convincing. An allergy of any kind can come on suddenly or even take years to develop. And I have had wildly itching ears and ear infections since moving to the Pacific Northwest 6 years ago. Sometimes even my e-tubes itch! This is someone who never had an ear infection as a child. I now believe that my ongoing ear allergy has led to swelling and inflammation of the eustachian tube, causing pressure problems in the middle ears and bouts of infection.

I'm going to be seeking the help of a very good ENT-allergist to try to help me address these problems. The HEPA filter alone has given me SO much relief. If you can avoid exposure to your allergen, be it food, mold, pollen, whatever, you can avoid the symptom flare.

If anyone has a hunch that they have a mold allergy (big hint: symptoms flare with rain/dampness/barometer dropping), there's help! In fact, all the different allergies have ways of being addressed and soothed, so please don't give up hope. We can beat this!

 
Old 09-18-2011, 12:41 PM   #7
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Re: My Story of Eustachian Tube Dysfunction

"If anyone has a hunch that they have a mold allergy (big hint: symptoms flare with rain/dampness/barometer dropping), there's help! In fact, all the different allergies have ways of being addressed and soothed, so please don't give up hope. We can beat this! "

I love your positive spirit. I try to remain positive that this will resolve. It's saddening to read stories of people who have been living with this for years. I don't want to be another statistic, and quite frankly I cannot see how anyone could stand enduring this for years!

This has been a difficult six months to say the least. I've never had a chronic illness before. And until this spring I'd never even been diagnosed with an ear infection. It was the first ear infection I'd ever had. And oh boy, I never knew how debilitating ear pain/discomfort could be. I once had a back injury that took a long time to heal, but I could actually ignore the discomfort so it didn't interfere with my daily life. What is it about our ears that makes any dysfunction so irritating and debilitating?

I, too, am allergic to mold. Is there a particular air filter you recommend? Also, do you have the crackling, crunchy, sticky noise when swallowing or yawning? Have your symptoms changed over time? I've been getting this weird numbness on the left side now. With so many people suffering from this, I'm surprised there aren't more specialists treating or researching this.

Thanks!
Anne Marie

Last edited by msMarieC; 09-18-2011 at 12:45 PM. Reason: Just a couple typos. :)

 
Old 09-19-2011, 01:22 PM   #8
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Re: My Story of Eustachian Tube Dysfunction

Hi Anne Marie,

I also have never suffered from a chronic illness like this. I have some lifelong health issues, but they are very much bearable with proper care. This situation with ETD seems like even when I do my very best, I still have a lot of breakthrough symptoms. Every time I think I'm better, I go back a few steps within days. I think it's especially upsetting because it involves part of our head, which is very near the brain, and the ear is also responsible for balance. I now call the ear the "center of wellbeing." I used to never think about ears, but now that I have had this, I know how much they impact just a simple sense of feeling "well"!

Your mold allergy very well could be contributing to this problem. Locally we are in "mold season" right now, but for us, with all the woods and rain, it's also present year round. The filter I bought after research is the Whirlpool Whispure...I believe the model number is 510. It is highly rated any place you read about it, and I do think it's helping. I might buy a second one for my work space, but at $300+ I will wait a while before doing so.

"Also, do you have the crackling, crunchy, sticky noise when swallowing or yawning? Have your symptoms changed over time?"

I am happy to say that the crackling/crunchy noise did go away with time. It took MONTHS. I also used to get a click in my throat with swallowing, which I assume is the sticky e-tubes, and sometimes even clicking while I spoke, which was really irritating. That also has passed with time. Now I just have a sense of fullness, not all the time but at least a few times every day, in both ears but mainly the left, which does not have the pe tube in it. I can voluntarily flex my e-tube muscles and hear a crackling noise, like the walls of the tube are pulling apart stickily. I am trying to stop doing equalizing my ears by doing that multiple times a day (sometimes many times an hour!), as I don't think it's helping. But I do feel somewhat better after reading yesterday about other people who can do this "voluntary tubal opening." I guess it's quite a good trick to have if you are a pilot or a scuba diver. And the crack/click noise is actually *normal*...something I didn't know. So all this time I have been getting freaked out that my tubes are still crackling when I flexed them...was for nothing.

I've had a pretty good week, but I'm still getting the tube surgery done in my left ear so I can fly and travel without any discomfort. That's scheduled for tomorrow. I'll let everyone know how it goes... I think with tubes in both ears I will feel more balanced in symptoms. It definitely helped my right ear a good deal.

"I've been getting this weird numbness on the left side now. With so many people suffering from this, I'm surprised there aren't more specialists treating or researching this.

My non-expert opinion: the numbness could be part of the inflammatory process, could be a pinched nerve, or even could point to possible TMJD involvement. I was told I have TMJD, but later my dentist told me that he didn't think it could cause actual ETD that can be measured by an audiologist. I do not, in the end, think TMJD is really is a huge factor in my problem, but some people get all kinds of weird ear symptoms from it...could be worth checking into if you haven't already.

Jennifleck

 
Old 09-22-2011, 04:43 PM   #9
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Re: My Story of Eustachian Tube Dysfunction

Oh, and DLT48, did you have sticky crackling sensations in the eustachian tubes, too, when swallowing, yawning, etc? Oh, and to top it all off, I woke up Saturday morning with a weird click/pop in my throat. Doesn't seem to be related to the ETD. It only happens when my head is turned a certain. But makes me think that all the tension and stress of the ETD is pulling other structures out of balance. So frustrating. :/

 
Old 09-22-2011, 04:48 PM   #10
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Re: My Story of Eustachian Tube Dysfunction

Hi, Jeni -- I just went back a few pages and saw that you had the click in your throat with swallowing! How bizarre! As noted above, I just developed this! I literally woke up with it on Saturday. I wasn't attributing it to the ETD, but now I'm rethinking that. This all started for me in May/June. How long before the sticky, crunchy sounds left? And same question regarding the clicking--how long before that passed? Was there something you did that helped with those symptoms?

 
Old 09-22-2011, 05:06 PM   #11
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Re: My Story of Eustachian Tube Dysfunction

Yes i have crackling. When i swallow, or breathe in. Even in the back of my neck i hear crackling when i move it. The ETD tenses up your muscles and you can get a stiff neck and shoulders. I go for a massage every once in a while to loosen up my muscles. ETD causes MANY other symptoms-but once you get rid of it, all the other things should go away. I feel like i am finally at the end of this awful problem. I've been a social hermit for 3 yrs, spending every minute either on the couch crying, or on the internet, trying to find answers. My husband has put up with alot. I don't think i could ever repay him for being so patient when i was hurting. I felt like i was so mean to everyone. I wrote my good bye notes to my family a few times.......you are not crazy to be so devastated! I thought i was crazy, until i started reading message boards and realized how it affects everyone this way. That's what makes me angry about my dr here, saying that drs won't do any new procedures around here because insurance won't pay. Ummmm does he know how much people are willing to pay for plastic surgery!!!! And they're not suicidal! So frustrating-we need more drs looking for answers and willing to try new procedures. I found my amazing dr in San Diego-he has been worth every flight from Utah to see him. For him, if plan A doesn't work, then he has a plan B, and if that doesn't work, then plan C and on, until it's fixed! Most drs give you that "deer in the headlight" look, and have no plan B. It took over 3 yrs to get a dr to diagnose me, maybe because they had no answer for me, on how to fix it?? There is an answer, just keep looking, have faith, and never, ever give up!

 
Old 09-23-2011, 03:47 PM   #12
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Re: My Story of Eustachian Tube Dysfunction

DLT48 - Thanks for the encouragement. Means a lot.

When did you have the most recent dilation done? Can you still feel the difference? Is it still working for you?

 
Old 09-23-2011, 07:06 PM   #13
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Re: My Story of Eustachian Tube Dysfunction

It was perfect for a few weeks, then I got a bad cough, went on a z pak and inhaler, but my ears started clicking again. My dr put me on a steroid spray and the ear popper for 2 months now. Not as bad as it was, but still not right yet. I forgot what it was like to really feel normal again until I had the dilation. It was like magic. Now that I know how I can feel, I don't want to go on with this condition very much longer knowing that my dr can fix it, but I need to have a little patience. But just knowing he will dilate them again with a bigger balloon and maybe put me on antibiotics longer next time, I have hope. I KNOW I can be fixed. And I won't have to suffer another 3 yrs not knowing how to feel better. It has to be worth it to you. I was completely drained of life and was willing to try the procedure. It worked, and I feel bad that I got sick and messed it up! But I'm willing to give it another try because it did work, so I have to give it another try.

 
Old 09-23-2011, 07:43 PM   #14
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msMarieC HB User
Re: My Story of Eustachian Tube Dysfunction

Wow - hope and frustration intertwined! I can't believe the luck, but am also glad you know there is a light at the end of the tunnel--a way out.

What a battle we've all been fighting. What a struggle! As I noted in an earlier post, this has been much more difficult for me than chemotherapy. With chemo I'd feel bad for a couple of days, but I was never almost non-functional. Occasionally I had to nap, but that was it. ETD has diminished my quality of life.

I hope we all find a solution soon. Reading your story and Jeni's has been most helpful. I hope we can stay in touch and help each other see this through.

Best, Anne Marie

 
Old 09-23-2011, 08:42 PM   #15
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dltt48 HB Userdltt48 HB Userdltt48 HB Userdltt48 HB User
Re: My Story of Eustachian Tube Dysfunction

If i have learned anything in the last few years, it's don't ever give up. I almost did, but i got to "see the light" for a few weeks so i know THERE IS HOPE! I know most of us have lived without hope for a long time and that's a scary place to be. My dr told me he prays for me every day. I told him, i'm glad he does, because he's probably much higher up on god's list than i am!! I'm feeling fortunate that i am so stubborn!!! Always looking for an answer. I'm giving it my best the next few weeks. I have quit dairy products and i really believe it has made a difference. I actually went to the gym today and it's been 4 yrs! I have laid on the couch and lost so much weight there was no way i could have gone. So life is getting better. Our tubes are staying swollen for some reason, whether it's infection, allergies, or damage. There is a reason, even acid reflux can cause ETD, so look at every possibility. I am hoping i have an allergy to milk. I recently found out it bloats me like i'm 7 months pregnant. I've drank milk all my life, but allergies can come at any time. Keep looking for your answer, and if you really get to the point you just can't do it anymore, look at the new procedures. I don't know what coast you live on, but there is a dr on both of them that are PASSIONATE about ETD and really know what we are going through. Keep looking and trying!!!!! You are worth it!!

 
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