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Eustation Tube Dysfunction & Mastocytosis
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by tah_map, Feb 20, 2007
I was diagnosed with Mastocytosis about 2.5 years ago and it has been primarily under control -- only minimal allergic reactions.  

Around the first of the year, I was diagnosed as having viral vertigo, which has improved, but not gone away.  After doing some research, I seem to have every symptom of Eustation Tube Dysfunction (ETD) -- vertigo-like symptoms, ear pain, occassional tinnitus, etc -- but also have nystagmus in a lateral gaze greater than 60 degrees.  I have read that ETD can be caused by an allergic reaction that makes the eustation tube swell.

The ENT I was referred to was no help and wouldn't listen to a word I had to say, told me I was fine and sent me on my way.  He didn't even use a scope to look in my ears!

Is it possible that I have ETD that is due to an allergic reaction caused by mastocytosis?  If an ENT isn't the right doctor to see, who is?

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Member Comments (23)
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by Sandy M, Feb 21, 2007
What a terrible thing to do to a patient!  I suggest you find a better Ear, Nose & Throat specialist!  

Sandy
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by moala, Mar 20, 2007
I have had ear problems for 3 1/2 years now, pressure, pain, dizziness and frustration with the whole fullness in the ear effect.  The EMT says its TMJ and Eustation Tube Dysfunction.  I've tried a number of medicines, netti pot washes, nasal sprays, acupuncture...I'm now considering the ear tubes, has anyone heard good things about this?  
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by awan, Sep 23, 2007
i suffer from tinnitus  eustation tube blockage i hear nose in my left ear all the time, cannot sleepplease help anyone
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by tamjb87, Sep 28, 2007
Hi, I've had tinitus in both of my ears as long as I can remember, and it gets worse each year, and It makes it really hard to concentrate in a quiet room, or go to sleep.  There is nothing you can do about it, and it will just continue to get worse as you get older.  The only solution they have for it so far is a tiny little fan thing that they can put behind your ear to drown out the ringing.  I have to sleep with a fan on in my room so that I can't hear the ringing.
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by unhappy with doctors, Oct 05, 2007
Ear tubes are no big deal.  A monkey could install them properly.  And that is about the intelligence level of a lot of ENTs.  Just keep in mind that ear tubes will have to be replaced frequently which ENTs love because that means more surgery money for them.  What you need are permanant ear tubes.  They are shaped like a T and they do not come out.  My son has them.  He was born with low tone cerebral palsy.  His eustation tubes to not work properly and never will.  Thank God for permanant ear tubes.  ENTs, as any other doctor in this life, are out to get the most money and draw out your illness as much as they can.  Your pain, symptoms and life mean nothing to them.  It is all about money. If you can, find an ENT who focusses on what he was trained to do which should be to take the best care of you and your problem.  
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by Wear/a/Jimmy, Oct 06, 2007
AMEN AMEN AMEN AMEN

AMEN AMEN AMEN AMEN

Sad thing is, ENTs are not the only stupid doctors out there. I wish it were the case, but it isn't. If you find a good doctor these days.....  it is a miracle.
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by nance09500, Nov 18, 2007
Hi there,
I read your feeling on tinnitus always getting worse is that your experience or do you know this to be the normal for most poeple, I also have had it for many years 17 to be exact, it was very manageable at one time but in the last 5 years I haven't been able to clear my ears of mucus.
So I got rid of dairy and wheat and there has been a big difference, I am no longer trying to clear my ears constantly.  But recently I have had a few very stressful things in my life and my tinnitus level has risen, anyone had experience with that.
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by fedupinIndiana, May 15, 2008
Hi there, my 5 year old son is getting ready to have T-tubes put in his ears.  This will be his 3rd set of tubes plus last time he had his tonsils and adenoids removed as well. As usual we were rushed through our last appointment and didn't get many answers about T-tubes and how they differ from regular tubes. I know there meant to stay in longer but does that involve any risks? Any information you can give me about T-tubes would be truly appreciated! Thank you.
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by Janie49, Jul 15, 2008
For the past 3 months I have had pressure behind my ears running up into my head on the left side and down along my jaw. For a time I had tinitus which nearly drove me mad but friends suggested I try Hopi ear candle treatment. This has cleared the tinitus although my doctor disputes the science behind them and is sceptical. I still have intermittant pressure problems but none of the doctor's reccommendations have helped - Flixonase nose spray, antihistamines nor ear drops. I also had an Indian head massage which relieved the pressure temporarily. Whether the relief is due to relaxation during the treatment, psychosomatics or what, I will repeat that until the medics can come up with a better treatment. Having scoured the internet, I do wonder if my problem is Trigeminal neuralgia. Has anyone ever had this?
Janie49