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Help with Eustation Tube Dysfunction
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by kidnurse81, Nov 08, 2006
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
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Member Comments (250)
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by Demiguise, Nov 08, 2006
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.
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by lauros, Nov 09, 2006
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
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by daggybee, Dec 30, 2006
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.  ***@****
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by daggybee, Dec 30, 2006
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
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by prplestarlette, Jan 13, 2007
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.
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by doclowc, Aug 04, 2007
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.
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by godkindoffaith, Aug 05, 2007
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
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by silent sufferer, Aug 11, 2007
send e mail if you need a shoulder to lean on / ear to bend.   you are not alone. ***@****
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by silent sufferer, Aug 11, 2007
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