It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-11-2008, 10:22 AM   #61
Inactive
(male)
 
Join Date: Feb 2008
Location: UK
Posts: 35
JohnUK HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

Quote:
Originally Posted by petear View Post
I just looked up your condition John and it seems the main symptom is dizzyness, is this true for you? I have had a CT scan which came back normal and have had the camera up my nose which showed to two ENT doctors that the base of my ET tube was open at the time, I don't get dizzy or have any hearing loss in fact my hearing is pretty good, my ear does however feel like there is a lot of pressure in it when it tries to equalize like when a train goes through a tunnel or your driving up a steep hill, I am going on a plane next week so that will be interesting, and my autophony is intermittent, what are your thoughts??

My symptoms in order from most bothersome to least bothersome - constant lightheadedness, autophony, vertigo, tinnitus, full feeling, nystagmus, hyperacusis and headaches (both sides).

Quality of CT scans can vary from place to place - mine were 0.5 mm slices - what were yours?

CT scans are only of so much help - you really need a MRI scan with saggital slices as well, and a COMPLETE audiovestibular test battery - I had 2 days worth of many, many tests - only then could we finally figure out what the REAL, actual problem is and a correct diagnosis was made after years of suffering.

Also, quality and completeness of audiovestibular tests really vary from hospital to hospital - I had mine done in the USA with a neurotologist (one of the best in the world) who has a lab (one of the best in the world) on the same level as NASA's lab for astronauts.

Dr Kujawski looked at my ETs with an endoscope, so did another ENT and misdiagnosed me with PET - they both either lied just to get me in the operating room and take my money or they are just completely incompetent and useless.

Please read my other reply...................

Last edited by JohnUK; 08-11-2008 at 10:34 AM.

 
Sponsors Lightbulb
   
Old 08-22-2008, 04:12 PM   #62
Newbie
(female)
 
Join Date: Apr 2008
Location: Midvale, UT, USA
Posts: 7
AlyseL HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

I just recently heard about a vitamin combination supplement called LipoFlavonoid that is supposed to help with tinnitus. I have some tinnitus, but frequent "white noise" and was wondering if anyone has tried that and if it helps. Is it worth it?

 
Old 08-23-2008, 08:46 AM   #63
Inactive
(male)
 
Join Date: Feb 2008
Location: UK
Posts: 35
JohnUK HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

Yorkere,

not once have I mentioned I have had 2 failed surgeries - so I don't know how you jumped to this conclusion - FYI - I have had more then 2 failed ET surgeries.

Not once have I mentioned type A tympanogram indicates PET - again I don't know how you jumped to this conclusion.

Type B and C tympanograms almost always indicate a ET dysfunction - most likely showing negative pressure or some kind of blockage. Type A tympanogram almost always shows your ET function is "normal". You are correct - a tympanogram most likely will not show a PET, the test is usually done to rule out other ET dysfunction.

2 ways to know if you have PET for sure - 1) if movement of your eardrums can be seen with your breathing and if you do have a breathing autophony. 2) Endoscopy of your ET clearly showing PET defect - that said so called ET specialist Dr Oskar Kujawski misdiagnosed me by looking with an endoscopy - so I would'nt believe no other doc apart from Dr Poe.

I would never rely on one doctors personal opinion on any "suspected" diagnosis - I would always seek a third/fourth opinion from other docs as well - so I can make a calculated decision - but that's just me - previous misdiagnosis and failed surgeries for the wrong diagnosis has made me VERY weary about docs.

Good Luck

Last edited by JohnUK; 08-23-2008 at 08:53 AM.

 
Old 08-23-2008, 03:40 PM   #64
Inactive
(male)
 
Join Date: Feb 2008
Location: UK
Posts: 35
JohnUK HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

Yorkere,

There is NO "apparently" about it - I do NOT 100% have PET, I NEVER 100% had PET - absolutely NO "apparently" about it.

You NEED a competent doctor to evaluate you PROPERLY.

Read my other post to see how I finally figured out I do NOT have PET.

Just because you achieve relief in the suppine position does'nt neccessarily mean you have PET - some patients with SCDS also achieve relief from autophony in the supine position - just one example especially for you.

Let me remind you that PET is a EXTREMELY rare condition!

Both my ET have been surgically closed, surgically manipulated and are messed up for the rest of my life - my middle ear pressure has been altered for life - there is constant negative pressure and now I am at risk of Otitis Media, erosion of the tiny hearing bones, risk of eardrum perforation, risks of infection, I have a conductive hearing loss, flying is so painful, the list goes on and on. Trying to surgically "fix" my ET now risks making things even worse.

IF I were you I would ask a ENT to look at your eardrums with an endoscope and at the same time show you on the screen to see IF your eardrums can be seen moving with your breathing. Also ask for a video feedback endoscopy of your ET and look for yourself if a patulous defect can be seen!

You are in California? - I would advise you to go see Top ET specialist in San Franscisco - Dr Steven Pletcher - friend and colleague of Dr Poe - they have studied ET dysfunction together - Dr Pletcher would know what to look for.

Good Luck.

Last edited by JohnUK; 08-23-2008 at 04:22 PM.

 
Old 08-26-2008, 03:26 PM   #65
Newbie
(female)
 
Join Date: Apr 2008
Location: Midvale, UT, USA
Posts: 7
AlyseL HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

Quote:
Originally Posted by yorkere View Post
JohnUK:

Please forgive my innacurate reading. When I read "If your tympanogram reads Type B or Type C - I doubt you have PET", I automatically assumed that a type A would mean a PET condition is indicated.

In my particular instance, so far at least, movement of my eardrums is not being seen. However, in a few instances when what I would consider severe autophony events have occurred, a few times breathe as well as voice is hugely amplified. During these occurrences I've been able to correct (so far) by blocking the nostrils and applying a strong sniff attempt. I've seen Dr. J Di Bartolomeo in Santa Barbara, and have been trying his product, Patul END, but it's been rather disppointing so far; the Patul END drops are very hard to use properly, and although I think I've been able to reach the Eustachian tubes, the effects are short lived. Most of my autophony so far has been a resounding effect of my voice, not huge, but most definitely aggravatingly apparent. My condition is so far not incessantly constant, it comes and goes, but does become almost constant as the day goes on into evening.

I've also been seeing an ENT at the House Ear Clinic here in SoCal, who's prescribed SSKI & Premarin (which I've not started yet), but there hasn't been any success reported by others with these that I've yet found. It could be that those who are successful don't bother to report, and simply stop corresponding on these boards and forums.

Question: Does not the ability to temporarily relieve symptoms by lying supine, or by placing the head between the knees while seated, indicate a PET condition?

None of the ENTs I've seen so far have examined my Eustachian tubes with an endoscope, with the exception of Dr. Di Bartolomeo. At that time he made no comment regarding what he observed.

I will follow up on your tip that an endoscopy needs to be carefully done to observe the ET, when I see the House Ear Clinic ENT next week. One huge difficulty is getting in to see these guys without having to wait a month in advance.

Apparently then, you do not have PET? How did you discover what your condition is? And may I ask, what surgeries have you had?

Many thanks for your reply!
I have PET and tried SSKI. It had no effect on the PET at all.

 
Old 09-03-2008, 08:26 AM   #66
Newbie
(female)
 
Join Date: Apr 2008
Location: Midvale, UT, USA
Posts: 7
AlyseL HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

Yorkere, I used 10 drops in liquid drink 3 times a day. I used it for 1 month as my doctor recommended. It had no effect at all on my ears. The only effect it had was that it made things taste metallic. I don't remember the name of the nasal spray I used. It was not a brand name drug and it was one that the drug store had to mix themselves. I'll have to see if I can find the name of it, but it wasn't Premarin. Whatever it was, it also had no effect.

 
Old 09-04-2008, 12:31 PM   #67
Newbie
(female)
 
Join Date: Apr 2008
Location: Midvale, UT, USA
Posts: 7
AlyseL HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

I wasn't given much instruction on the nasal drops, so I'm really not sure I did it right. It came it a bottle shaped like ordinary nasal sprays. The instructions were the same for any nasal spray, insterting the end of the tube, spray, and inhale. I did 3 squirts per nostril 3 times a day. Perhaps the reason it didn't work is because it didn't reach the eustachian tubes, like you said. I'd be curious to know how 'someonecares' used it.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Roaring tinnitus - Patulous eustachian tube? paul2009 Ear, Nose & Throat 10 08-29-2011 01:32 PM
Patulous Eustachian Tube has Destroyed my Life EarOfDespair Inner Ear Disorders 21 05-03-2008 11:48 AM
P.E.T Patulous eustachian tube my story tell me yours any ideas for natural cures? petear Hearing Disorders 7 07-23-2007 07:12 AM
Patulous Eustachian Tube Surgery Experiences ? mazomatic_r Hearing Disorders 35 12-22-2006 10:09 AM
Patulous Eustachian Tube (PET) *cure? azumi_mm Inner Ear Disorders 3 07-28-2006 02:56 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 10:31 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!