Help with Eustation Tube Dysfunction

[kidnurse81]

Hello.  My fiance has been suffering with eustation tube dysfunction for a little over 6mths. now.  We have tried numerous decongestants and nasal sprays as well as a round of steroids.  His ENT did allergy testing on him, however, he did not have any significant allergies.  Our last resort was to have PE tubes placed.  This only made his symptoms worse and they took them out after a couple of weeks.  Suprisingly after they took the tubes out and his ears were healing, he was symptom free.  When the holes closed up he began with the same symptoms all over again.  He has constant pressure in both ears, a fluid-like feeling (though the doctors say there is no fluid), and a stuffy nose.  He is completely miserable and losing all hope of getting better.  We are at a loss.  He has thought about having the PE tubes put back in and giving it a little longer this time to see if they will help.  We are both scared and upset and have no idea what to do at this point.  Any suggestions would be greatly appreciated.  Is there any other treatment at all for this disorder??
Thank you so much,
Amy

[Demiguise]

Yrs. ago, I also went through this terrible problem & ETD is
just the worst thing to dx/treat/fix. My case was unilateral
w/ ear but bilateral w/ nasal prssr-hdprssr. I also went through
several ENT's/Neurotologists scans & tests. Cause can be 1 or
multi-problems. It's a rule out game. Hm-journal, like a sm-
calendar bk is great since it's dated & can go back to see date
of matching events/symptoms. Use abreviations. The ET's are in the back of the throat & connect to middle-ear. I had a tube put in that window & better for 3 wks then turned on me. It
closed up from debrie that can enter canal from outside pull like a straw. Had removed & better. Hole closed got back problem
+ puffy eye w/ worse ear prssr. Yrs. of meds/dr's, I can tell
you just inflammation in throat can close up ear even from
drainage/overlooked fluid/sore throat/windy day stimulates drum.
Get a 'Coronal CT' & get copy for yourself on All tests. Have
Tympanogram ear test (quick plug in ear for 1 min suction). That
will pull un-seen fluid in ear to window. It will show 'Serous
fluid' if a problem, on graph-print if there. We can all get trapped edema from lack of vent/earpop. CT is needed to rule out infection/cysts/polyps/ck air level in maxillary sinus. It
may show nerve compression above ear to ck the inner-ear. Only
the Coronal scan picked up a sm-maxillary cyst causing an upset
to the air balance. ENT said not a biggy. Yrs. later, cyst was
removed by another ENT to 'humor' me. Ear-problem happened less.
Very much less! Later my MD noticed elav. BP so put me on a
diuretic to reduce vascular fluid build up. Pee'd more but no
more squish in ear? I get prssr back if sore throat because
that 1 ET in throat has 'delayed opening' do to the jerks that
waited & dismissed. A Coronal is (stomache dwn w/ nose going in)
& not skull sinus CT w/ nose up & on back. It's so valuable. I
had 3 over 3 yrs & ea showed cyst enlarging. I had copies & that
was my leverage. They can also order an ABR test to see if a
delay in brain telling ear to work right. Do a print & hi-lite
key things & ask ENT nicely to humor him. Don't let yrs. go by.
Muscle/vessel atrophy can happen. No allergies so ck w/ CT.
Boy, do I wish him luck. I think ENT's get in a rut. If ear
locks up too long, ask Dr. for maybe lo-dose Xanax. It will
help pop ear but won't fix. Gd-luck.

[lauros]

HI SOUNDS A BIT LIKE ME.  i HAVE HAD SYMPTOMS SIMILAR FOR YEARS WENT TO 3 DIFFERENT ENT SURGEONS, MRI'S CT CAMERA THE LOT,  TO NO AVAIL FINALLY THEY RITE ME OFF.  THEN CONSULTED NEUORLOGIST PRIVATELY NEED SAID HE COULD SEE ANYTHING AFTER SOME STUPID TESTS WITH COTTON WOOL AND SMALL HAMMER.  PAID FOR NUMEROUS ALTERNATIVE PROCEDURES. BOWEN ACUPUNCTURE CHIRO ETC SOME WORKED FOR SMALL TIME.  mY SYMPTOMS:- FACIAL ACHE, FEEL AS IF NOSE IS BLCOKED JUST BEHIND NOSTRIL AT BOTTOM AND CAN ACUTALLY SUCK STUFF INTO MY MOUTH. EAR FULLNESS SOMETIMES FEEL AS IF STUFF STUCK IN THROAT, WHEN REALLY BAD GET REFLUX.  NOW I HAVE TINGLING AND AND FEET AND SORE NECK (WHERE THIS IS RELATED OR NEW CONIDTION I DON;T KNOW.  wENT FOR ANOTHER MRI ON NECK YESTERDY AND SEE CONSULTANT NEXT TUESDAY,  SO FINGERS CROSSED SOMETHING SHOES UP.  IT GETS YOU SO DOWN, THAT YOU COULD PUT GUN TO YOUR HEAD.  FLARE'S UP FOR NO REASON, THEN SETTLES DOWN AGAIN, DONT WANT TO BOOK HOLIDAYS ETC INCASE YOU ARE ILL,  NOT A GOOD LIFE I AGREE,  SO AT LEAT YOU KNOW THAT THERE ARE OTHER PEOPLE GOING THROUGH SIMILAR WITH YOU TAKE CARE

[daggybee]

Lauros,
I agree about the gun to the head thing too.  I am in so much pain, and knowing that there are other does make a huge difference because the doctors amke you feel like you are complaining for the fun of it.  I am close to losing my house.  I wish I could work at even the smallest job. I was a nurse making a good living 8 months ago, now I am unemployed and in excruciating pain with a sinus and "ear" infection, despite being on IV antibiotics.  I have a huge amount of clear fluid that was causing me asthma a few days ago, now it has once again inflameed my maxillary sinus and ear, along with the nerve behind my eye.  I know it s a n infection because this is the same way each sinus infection I have had since my second sinus surgery done in October , has started.  It has gone to my ear, and even when I had an excruciating infection in my ear a month ago, they couldn't detect any fluid.  I think that we are living in an archaic period of otolarygology.  The technology and knowledge is not advanced enogh, and so when the doctors dont know what's going on they just make youfeel like you are imaging it  The sinuses are just on the other side of your brain, separated by paper thin bones, and bacteria can and does go through the bone.  The physicians need to take it more seriously.  Every time I get an infection I feel like I have to prove it to them.  Often I am in misery weeks before they can finally see some pus.  It's ridiculous.  I would give anything to be out of my misery.  If anyone wants to email me, feel free anytime.  ***@****

[daggybee]

Lauros,
The sinus infection I had amonth ago, I had tingling and numbness in my feet and hands, and face, my neck was stiff, and I had such incredible ear pain that I thought that I would die of the pain itself.  I got IV antibiotics.  No one tested me for bacterial meningitis, but I 'm pretty sure I had it because I was also not mentally clear and couldnt eat for 2 weeks. Please go and try to get IV antibiotics.  Sometimes an infectious diease doctor will put you on IV antibiotics if you explain the symptoms to them, if you feel like its a  infection.  I was always told that I shoudn't worry, because if I ever got meningitis I would have a fever, or the MRI of brain would show.  Well, I found out the the only true test is the lumbar puncture.  So, if your neck is stiff and you think that you have an ear infection or sinus infection, I would recommend seeing a neurologist and ask him about whether he thinks you should have a lumbar puncture

[prplestarlette]

I have had a suctioning type feeling in my ears. I have had tubes in my ears 4 times due to my ENT believing my hearing loss was related to fluid buildup behind the eardrum. Last check showed no fluid but still a moderate to severe hearing loss in both ears. Doctors can't really tell why I continue to get this feeling. All I know is it'll go away for awhile if I plug my nose and blow as hard as I can until my ears pop.

For the person mentioning meningitis, I had meningitis this summer and trust me, you will know when you have it. I thought migraine headaches were the worse head pain you can have....I learned differently this summer. You will barely be able to hold your head up and even a pin dropping will make your head feel like someone continues to roll over it with an army tank. Fever is more common in bacterial meningitis than viral. I had viral and didn't run a fever the whole time I had it. The only way to detect meningitis is an LP and the only time they will run one is to detect an illness that is presenting in a way that meningitis or another disorder only verifiable through LP would.

[doclowc]

i have suffered for a long time,as well as my wife,with hearing loss mainly in my left ear.we travelled by air last year and a woman offered me a dramamine tablet.well,to my complete astonishment my ears cleared up and could hear normally for awhile.yesterday i bought more dramamine and took it according to dosage instructions. so far i can hear normally and am planning to keep taking the dramamine.i will also confer with my doctor about it also.i hope this may help others that have eustacion dysfunction.

[godkindoffaith]

I have been dealing with the same thing for seven months several doctors only now have I received peace. I am in my second treatment of spraying four different types of solution into my nose and over a period of time it burns away the lining of my synisis allowing or helping my eustation tube to begain to work. It is slow but my ear stays open more often and I am hearing better. I still use the sprays to help move the fluid down my throat.I live in chicago and my doctor is at the Mid West Sinus Center University Head and Neck Associates. Jay M. utton M.D. I am just blessed and happy that my ear is open. I went through all of the above and for a while I though I was going crazy because the doctors said they saw nothing they kept looking for ear infection when in fact it was a sinus problem. I even had a doctor tell me that I needed a hearing aid. I knew then I was in the wrong place I just left out of his office without finishing the conversation.  Call the university and talk with them about this procedure it's painless it just burns away sinus tissue helping the eustations tube to began working. I pray you get better.  Karen

[silent sufferer]

send e mail if you need a shoulder to lean on / ear to bend.   you are not alone. ***@****

[silent sufferer]

this site is exellent.
so glad im not alone. although, my heart goes out to all fellow sufferers, no one truely understands. this has to be the hardest wall you could ever climb.
thought i was going mad,,,constant ear pressure,,, heavy head,,, struggle to swallow,,,stressed to the max. (37 yrs old) and really thinking "am i loosing it"?  
going to have grommets in 2 weeks, referred by ent. £1500 (bupa) hope its not a waist of time and hard earned money. cant wait 3 more mnths for nhs. fed up sniffing hot water and spraying stuff up my nose to no avail. many thanks for web sites like this one. i too pray  all get better soon. perserverence seems to be a large step towards the finding a cure. lee  

[silent sufferer]

leekeel @ hotmail. co. uk      in order to share leave spaces in e mail address

[sweetnsassyinky]

I am currently going through hell with pain. I slept less than 2 hours on and off last night. I have a sensation of bubbles popping in my ears. I actually got into an ENT today who ordered a scan of my sinuses (have that tomorrow afternoon). He said looks like chronic sinusitis and collapsed eustation tubes. He also prescribed 4 days of steroids (which is not covered by my insurance). I feel like I am going crazy!!! My throat hurts, I feel like I am going to have a panic attack from not being able to breathe. I am 30 years old and feel like I am 50! Any info is appreciated.

[honeystix]

Have you heard of a devise called the "Ear Popper"? At the push of a button, it delivers a gentle puff of air through the nostriles to painlessly and instantly open blocked eustation tubes. I'm tempted to buy one for airplane trips to avoid the trauma and pain I'm plagued with each time I fly. I suspect most decent doctors will have them soon.
Just search "Ear Popper" on the net.
Bye for now,
Glenn

[SanDee53]

I am dealing with most of these problems. Basically my left ear feels like it is plugged. I can hear myself talk inside my head. I have fibration if I talk above a whisper. Been to ENT and audiologist. Then referred to Oral Surgeon for possible TMJ. I am also seeing a Chiropractor. Nothing is helping. The Drs say they can find nothing wrong. I have been suffering for 6 months now with no sign of ever getting better. I think my family is so tired of hearing me complain. No one understands unless they have walked in my shoes. Based on an article I read about Autophony the Eustation tube is supposed to stay closed only opening when you swallow. With this problem the ET stays open all the time. Seems like everyone who goes to the Dr is first always assumed to have allergies and put on nasel spray and other allery meds which never offer relief for this problem whatever it is. Would love to find a Dr who says....I know exactly what it is and this will get rid of it for good! Wouldn't that be great?

[Enoch Choi, MD]

Eustachian tube (ET) dysfunction is very frustrating, just look at all of the people suffering on this page

Saline nasal rinse (over the counter), prescription nasal steroids are the cornerstone of treatment, since it stops nasal mucous from draining down the back of the throat (post-nasal drip) and swelling up the exit hole of the ET

When chronic, helpful treamtents can include allergy shots, nasal anticholinergics (atrovent), sinus surgery (if a CT scan shows blocked ostia), tympanostomy tubes after myringotomy, and others.

Your ENT can help you sort through which are helpful for you.

[sunshinenewday]

I am about four months pregnant right now.  Ever since I became pregnant I have had Eustachian tube dysfunction in my right ear.  It is very annoying since I sing and I hear sounds distorted.  I hope this goes away after I have the baby.  I don't know how it is related to my pregnancy but that is when I started having problems.  

[Enoch Choi, MD]

Pregnancy does different things to different people.  Many people have relief of their allergies, but some get worse allergies which leads to more post-nasal drip, and clogs ears to make the sound distorted.

Ask your ob/gyn about nasal steroids, some believe it's ok to use.  Most every one allows their pregnant patients to use nasal saline rinses since it doesn't contain any medication.

[bazil11]

Hi everyone

My poor dad has been suffering with this for months, his GP is useless and the ENT dept dont seem to know what to do or even care. This seems to be a common problem going by what i have read here and on other sites

we have been reading up everything we can find and it seems to us like there are 2 main problems people are having, its either;

1 Your Eustachian tubes are blocked and always closed. This (i imagine) would be painful, as if you were on a plane and could not pop your ears to releive pressure (called a Eustachian Tube Disorder or ETD)

or
2 Your Eustachian tubes are stuck open, causing you to hear your own breath  and your voice booming on your head

we are pretty sure now that number 2 is my dads problem, its called a Patchlous Eustachain Tube (or PET) and im amazed that his 5 visits to the ENT didnt dianose this!!

His problem is also worsoned by having a perforated ear drum

we are going to try some drops called Patulend, has anyone tried this?

oh and a little tip if you are serching google for info, tying in Eustation Tube and Eustachian Tube brings up very different results

i sincerly hope that you all find some releif to what im sure is a terrible problem for you all

[Lonny007]

Hello all, sounds like everyone is miserable here. When I read the problems here it reminds me of my problem. I know exactly what is causing my problem though but took me years to find out, it could be a possibility for yours. Let me tell you my story and symptoms and a few ideas (I am not a doctor though) I had a cold I went on an airplane, my noise and ears got all stuffy and pressurized, same as when going over mountains. That evening I blew my noise in shower and heard a pop in left ear. I woke up next mourning and I felt lightheaded and off balance (no I did not have spinning sensation) I felt like there was a wet fluid sensation in my left ear, my ear would make popping sounds when I played with my Eustachian tube. (Doctors would always look in my ear and say no don’t see any fluid?) Over time the fluid from inner ear would come down Eustachian tube and I would have this fullness sensation in my ear off and on. I would constantly make these throat scratching sucking moves with my throat and mouth to try and suck or get this fluid out but it’s constantly up there and I always do this. The wet fluid sensation I feel in my ear, also irrates and burns somewhat and it seems to be aggravating my throat, and also my upper lung area which also seems to effect my breathing. Sensitive to loud noises, eyes sensitive to light also with vague headaches. My problem also causes memory problems and trouble concentrating, and anxiety. My problem also makes general sinus problems worse cold, allergies etc. Anyhow these are the majority of my symptoms. I went 3 or 4 years like this constant but fluctuating day to day somewhat. All doctors I went to where of no help. I finally find only one that is like night and day with inner ear problems. Anyhow after numerous tests, which did not really point to anything specific, we decided to do exploratory surgery on my left inner ear, and sure enough the doctor found a fractured stapes footplate with inner ear fluid pouring out into the middle ear. So I finally found out what my problem was, he patched it up and all the above symptoms went away. You don’t have to have a traumatic event to have a perilymph fistula you can still have a tear in the round or oval window, and you don’t have to have a fractured stapes footplate to have a leak either. Lucky I don’t have ear infections, because your chance for meningitis and encephalitis increases allot when you have a perilymph fistula. I read that someone above has my symptoms and recently had meningitis as well, that is not good, heck you may have a perilymph fistula. If a person has a off balance sensation, wet fluid sensation in ear, fluid popping sensation in ear and upper Eustachian tube area, along with any other symptoms I have mentioned I would certainly suspect a inner ear leak. The best Doctor I have found so far is DR Black from Portland OR by far. Unfortunately my ear is leaking again, my surgery was successful for 10 years +or-. So I will be having surgery again. Oh another thing you do not have to have hardly any hearing loss to have a perilymph fistula, most Doctors think this goes hand in hand no hearing loss no fistula, they are dead wrong I had a hell of a leak and not much hearing loss if any. (Tell them I said so) Let me know if you have any questions, I know how bad it sucked not knowing what was wrong with me those 3 to 4 years. Good luck everyone!

[suzie51]

I am sorry to hear that there are so many people suffering from ETD.  I have always had terrible pain and loss of hearing when flying, but this summer I develped a terrible double ear infection with loss of hearing.  After having the ear drained, I began having crackling, throbbing and eventually shooting pain.  The ENT tested my hearing-it was fine-and said there was no fluid.  We tried Nasonex, which seemed to inflame the problem.Next we tried an ear tube.  It has been two weeks and many of the symptoms have subsided.  However, I still feel some pressure, tininitis, cracing and a little discomfort. So although it is better, it is not normal.  I am petified to fly at this point and have a daughter's wedding across the country.  I can't imagine going through this type of pain while stuck on an airplane. Is this a waiting game to see what happens next?  Any suggestions?

[Enoch Choi, MD]

the tympanostomy tube should have equalized the pressure and relieved the pain of eustachian tube dysfunction, unless the pain is on the other ear, opposite the one with the tube in it?

see your ENT before you fly!

[suzie51]

Thank you for your response.  I am scheduled for a follow-up appointment on Tuesday.  Are there any pertinent questions to ask him?  I have a constant tickle and clear congeston atthe base of my throat.  Should I be requesting allergy tests?  ...or Cscan of the ear and throat area to rule out other causes?  Why I ask, both my parents had tumors of the brain at my age.

[Enoch Choi, MD]

Good luck on Tuesday.

Allergy tests can help see if your issues are related to allergic rhinitis causing post-nasal drip leading to the tickle and base of your throat symptoms.  Medicines like nasonex can help, if you take them for a few weeks before giving up on them

Be sure to tell your doctor about your parents and their brain tumors.

[antarrishu]

I also have been suffering, never had ear aches or infection before. Same stuff as above as far as the dr. and their 'practice'. Well please let me know how this all works out for you as I need to do something as the pain is just too much. I feel it in my temples and that scares me.

[Annanicole]

Hello,
I am almost 8 months pregnant and my ENT said I have ETD.  It is very uncomfortable and painful at times.  I hear my own heart beating.  I would love to be able to contact you.  My e-mail is ***@****.  
Good luck,
Sherie