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vernon123 01-31-2002 06:11 PM

Eustachian Tube Catheter
 
For the past year and two weeks, I have been living with a defective eustachian tube. First, there was horrible popping in my left ear. Other times the left ear would feel plugged and tender. Then, the popping almost went away, only to be replaced by these maddening muscle spasms. When the muscle spasms were treated with botox injections, then surgery, I developed patulous eustachian tube dysfunction in my left hand eustachian tube. I have been suffering with this for four months now. First, my left ear would pop very loudly, followed by the severe noise of breathing against the ear drum. My voice gets distorted when I try to talk. THIS IS DRIVING ME INSANE. I read an article on patulous eustachian tube dysfunction where there was a brief mention of a procedure where a plugged catheter is inserted in the defective eustachian tube preventing it from EVER popping open. Next a permanent ventilation tube is placed in the ear drum. This procedure would solve my problem once and for all. The question is, is this surgery routinely performed or only after mainy years of suffering after nasal sprays and drugs have failed? I am very desperate. My life is at a standstill. I can't do or enjoy anything. I can't study or go to work because this problem is so unbearable. Had it not been for my parents, I would be on welfare. Any information on this procedure would be helpful.

ImeeRP 05-26-2002 01:03 AM


Hi there,

I am suffering the same disorder, Patulouse Eustachian Tube. I am wondering, any improvement in yours?
What have you done to cure it?
I'd like to talk to someone that understand how I feel.

Thanks,
Aimee

aja 05-28-2002 08:59 AM

Aimee,

I understand how you feel and it always puts a lump in my throat when I read words like yours because sometimes I feel very alone with this, I've never met anyone else with PET only those on this site.

I've had it for 4 years or so, for a while I was obsessed with finding a cure, I couldn't believe that there wasn't something out there that could be done about it..and maybe there still is..but now I want to get on with living my life and try to be happy..and it's the best thing I could have done, don't let it take over you. It took me a long time to realise that.

I have to go now because I've finished work. Drop me a reply if you get this and we can discuss coping strategies.

Till then take care.

ImeeRP 05-28-2002 09:52 AM



Hi aja,

I'm glad to hear from someone that understands me also.
We can discuss things on how to cope up with it.
I was just recently diagnose with it either...
My ENT md wants to see me in about 3 mos. and see if any progress will result by not using any medications at all....
I am really glad that someone out there understands me because none in my family would understand how I feel... I'm all suffering here and they just all ignore me...
hey... maybe you can give me your email address so that we could exchange emails...

talk later,
Aimee

ImeeRP 07-05-2002 12:00 AM



Hi aja,

It's been a long time that I haven't heard from you.
Here's an update on what have caused my PET.
My sinus scan had showed some blockage in my right maxillary sinus which have caused my left ear to be more aerated, patulous.
I begun taking allergy pills called zyrtec which helped a bit with my right eustachian tube blockage. However, I still have the PET on my left ear....

By the way, in one of your posts, you mentioned ORAL CONTRACEPTIVES might have something to do with PET. I've done research about this and found out one lady who got well from PET after stopping from taking pills ...a week after from doing so, she got well....
It looks like you did the same thing and it didn't do anything to you..... is that right?????? Please let me know as I plan to stop taking pills also......

hope to hear from you,
Aimee

ImeeRP 07-05-2002 12:08 AM



Hi aja,

Here's an update on my condition......
I found out I had some blockage on my right maxillary sinus caused by allergies.....and so, it was never aerated....
My doctor put me on some allergy pill called zyrtec and had some relief on it and i begin to feel drainage on my right ET now.... in other words, i had blockage in my right ET that have caused PET in my left ear.....
My right ear has healed however PEt in my left ear still persists....

About ORAL CONTRACEPTIVES, I heard about them too that they too can cause PEt... I run into a lady who actually healed hers after a week of stopping from taking it..... In your posts, you seem like you tried this strategy also .....but, it didn't seemed to help you all, did it????? I'd like to hear your experience if you ever did stop taking pills... if it did help or not??????...as I try to do this next.....

I hope to hear from you..
Aimee

bumbie37 07-13-2002 10:17 AM

hello all, I can relate to the alone feeling. I've been plagued with ear troubles my whole life. (37 years old) Had ear infections as a child, which left me deaf in left ear. Still have reacurring ear problems. popping in right ear. Had a sinous cold over the fourth of july weekend. Went swimming and tried to keep ears dried out, but blew my nose and right ear popped like crazy and now is like plugged up or something. oh also blood came out my nose. not good! now sound is all muffled. Tried to make an appt. with ENT dr. but never called back. This condition is leaving me feeling kind of drained. Dont know if thats all in my head (no pun) or what. Well thats my story in short. Hopefully I'll get to the dr. soon. bye.

IACKaren 07-18-2002 08:35 AM

Nathan:
I have not heard from you in a while. I was wondering how you were doing. I continue to struggle like you with my Eustachean Tube Dysfunction. It seems as though my ears have flared up and won't settle down now. I constantly have snapping, crackling, and popping, mostly in my left ear, and at times very loud and annoying. I don't know if there is any kind of cure for this problem. This has been going on for 9 years with me. I don't see any relief in sight. The weather affects me a lot as well. They seem to act up more when high or low pressure fronts move in and out. I had tubes put in, only to have them removed 3 months later. I suffered from side effects and an allergic reaction which was far worse than the snapping, crackling, and poppings. So If I have to tolerate something, I would rather have what I do now than what I went through for 3 months while tubes were in my ears. I just don't think there is any kind of cure for my problem. I wish you well and hope to hear from you soon. I think of you and wonder how you are.

aja 08-31-2002 05:38 AM

IAcKaren, Nathan and Aimee,
Karen, I know you suffer dreadfully with ETD, but is your left eustachian tube patulous like mine and Aimee's (open all the time), or does your ETD come with different problems? The reason I ask is because I noticed you mention that your condition is effected by high and low air pressure,.. if you also suffer with PET (patulous eustachian tube dysfunction) then that could be quite reassuring for me because I went on holiday 9 months ago to Florida and I found that my symptoms were considerably better for the 10 days that I was there and I wondered if it was just a coincidence or if it could be something to do with the climate/air pressure.
Aimee, I'm not sure if you spotted my other message, but I'm really curious to know what you think about my right nostril being slightly blocked all the time and the fact that I have PET on my left hand side. Do you think that the fact that my right nostril is always a little blocked could be causing my left ET to be patulous????? please tell me what you think. Is it worth me having than sinus scan that you had done??
Have you tried coming off the Contraceptive pill yet? Did it help?
Nathan, have you decided to go ahead with the catheter for your PET???
Hope to hear from one of you soon,
aja

chapelle 02-28-2003 01:42 PM

Help someone!
I have suffering from Patulous Eustachian tube for around three years and starting to really go crazy!

I got it about six months after I was on the birth control pill and believe it is 100% related. Although I have been off the pill for about 2 and a half years and yet it has not gone away! My symptoms come on around mid day usually at lunch, or anytime I workout or I get nervous. What is different with me is that when my tube opens I get mucus actually going into the tube. Therefore my symptoms wont leave until I am able to suck out the mucus. I know Yuck!

My question is has anyone tried hormonal therapy and how is it done? I have tried Estrogen in a gell form and it has help at times but I still continue to get echoing and congested feeling in my right ear. I feel quite strongly that it could be other hormones in body that are causing these problems. Also does anyone know exactly what oral contraceptives do to your body. I know it is hormonal manipulation but are there lasting affects?

It's driving me crazy and I'm starting to develop panic attacks when I'm fearing my symptoms are starting to come on. Please anyone help.

zip2play 03-01-2003 05:49 AM

Do a google search (since board won't allow links) of "patulous eustachian tube".

There are several Chinese and Japanese herbs/teas that show some efficacy as well as a couple treaments (like gelatinous sponge injections to make tube narrower)

Have any of you tried ventilating your middle ears with a sort of alternate "puff-suck" method to clear out any "stuff." It's tricky to learn and must be done gingerly but it's a godsend if done right. Be careful though, eardrums aren't made of steel.

Though I don't have PAT, I've gone through the ringer with tinnitus, deafness, middle ear surgery...YADA!

petpeeve 07-25-2004 02:18 PM

Re: Eustachian Tube Catheter
 
[QUOTE=Nathan Troide]I am very desperate. My life is at a standstill. I can't do or enjoy anything. I can't study or go to work because this problem is so unbearable.

Hi Nathan: I noticed your post is old but I am new to the site and trying to work my way through all the comments and then respond to ones that seem to be similar to my own symptoms. I wanted to ask how you are doing since the post I am responding to was almost 3 years ago. I have had PET for about 5 years and it has changed my life considerably because of the voice resonance. Speaking is such a uncomfortable situation even under the best circumstances. I limit talking to people and it has to be in a quiet setting where I can speak softly---having lunch at a restaurant with background music and a group of people is impossible. No one can hear me and just raising my voice a little for them sounds so loud in my own head that I can't stand it. So I have just gradually withdrawn from social settings since most get togethers are with more than one person and are outside the home. Do you have these kind of problems? You said it was hard to go to work and your life was at a standstill and I just wondered why. Is it the voice problem? Hope to hear from you.

petpeeve 07-25-2004 02:46 PM

Re: Eustachian Tube Catheter
 
[QUOTE=zip2play].

There are several Chinese and Japanese herbs/teas that show some efficacy as well as a couple treaments (like gelatinous sponge injections to make tube narrower)

Hi--just read your note and wanted to let anyone who is interested know that I have PET. I was accurately diagnosed 5 years ago but probably had beginning symptoms before that but it was missed by several ENT's. I have tried just about everything available--ventilation tubes (helps only with the inspiration sounds that some people have but does nothing to cure the problem---I found it distorted my sense of hearing, they were short term and I was glad when they came out). Also tried the Premarin nose spray but no difference. Tried the PIMA (Potassium Iodide suspension--works on the same premise of causing irritation that plumps up the ET--don't quite understand that one since it is an oral liquid vs topical application--how does it know to plump up the ET vs the eyelids--doesn't make much sense really), did the FDA clinical trial for nasal drops with the Santa Barbara ENT and ALSO had a source that hooked me up with the herbal tea called Kamikihito.
It came from a pharmacy outlet in Japan and you can read more about it by going to PUBMED and doing a search on PET. There are about 50 different articles that allow you to read an abstract/summary. Quite a few researchers in Japan although incidence appears to be about the same. The herbal tea is actually a decoction which means that it is steeped for a long time and reduced like a reduction wine sauce (if you are a cook you will understand that one). Supersaturated solution or "boiled down"--however you want to describe it. I have tried it and had no results but that doesn't mean you won't. I have several friends that swear by the use of herbal medicines. It was about $100 for two large bags of herbs. It is steeped daily and taken 3 times a day with meals. I would normally hesitate to take an herb but since it was talked about in a medical article that a physician had written and it came from a pharmacy outlet I took the chance. I figured it might help something else even if it didn't cure the PET but no luck for me. Tea is OK tasting--smells like medicine and tastes the same but no big deal. Herb is also called Jia-Wei-Gui-Pi-Tang if it comes from source other than Japan. None of the American ENT's I went to heard of it or seemed to have any belief in herbs but it is part of the Asian medical way and has worked for them for years. We certainly don't seem to have all the answers in the West. Might be hard to find without a connection or source but check out the articles at PUBMED just to educate yourself about PET and I think the research doctor was Ishikawa. Good luck. I will try just about anything once and it appears I have. I am still reluctant about surgery since most methods seem to be permanent and irreversible--I am not sure what the benefit is of having a permanently closed ET tube is over a permanently open one since the normal ET opens and closes in order to pressurize the ear. I am anxious to talk to someone that has had surgery and have them tell me what they feel. I think one of our participants called Lib is doing that Aug 9-2004 so lets hope for the best for her. Have you read her posts? She seems to have had the problem for along time also.

lib 07-25-2004 05:42 PM

Re: Eustachian Tube Catheter
 
[QUOTE=petpeeve][QUOTE=zip2play].

There are several Chinese and Japanese herbs/teas that show some efficacy as well as a couple treaments (like gelatinous sponge injections to make tube narrower)

Hi--just read your note and wanted to let anyone who is interested know that I have PET. I was accurately diagnosed 5 years ago but probably had beginning symptoms before that but it was missed by several ENT's. I have tried just about everything available--ventilation tubes (helps only with the inspiration sounds that some people have but does nothing to cure the problem---I found it distorted my sense of hearing, they were short term and I was glad when they came out). Also tried the Premarin nose spray but no difference. Tried the PIMA (Potassium Iodide suspension--works on the same premise of causing irritation that plumps up the ET--don't quite understand that one since it is an oral liquid vs topical application--how does it know to plump up the ET vs the eyelids--doesn't make much sense really), did the FDA clinical trial for nasal drops with the Santa Barbara ENT and ALSO had a source that hooked me up with the herbal tea called Kamikihito.
It came from a pharmacy outlet in Japan and you can read more about it by going to PUBMED and doing a search on PET. There are about 50 different articles that allow you to read an abstract/summary. Quite a few researchers in Japan although incidence appears to be about the same. The herbal tea is actually a decoction which means that it is steeped for a long time and reduced like a reduction wine sauce (if you are a cook you will understand that one). Supersaturated solution or "boiled down"--however you want to describe it. I have tried it and had no results but that doesn't mean you won't. I have several friends that swear by the use of herbal medicines. It was about $100 for two large bags of herbs. It is steeped daily and taken 3 times a day with meals. I would normally hesitate to take an herb but since it was talked about in a medical article that a physician had written and it came from a pharmacy outlet I took the chance. I figured it might help something else even if it didn't cure the PET but no luck for me. Tea is OK tasting--smells like medicine and tastes the same but no big deal. Herb is also called Jia-Wei-Gui-Pi-Tang if it comes from source other than Japan. None of the American ENT's I went to heard of it or seemed to have any belief in herbs but it is part of the Asian medical way and has worked for them for years. We certainly don't seem to have all the answers in the West. Might be hard to find without a connection or source but check out the articles at PUBMED just to educate yourself about PET and I think the research doctor was Ishikawa. Good luck. I will try just about anything once and it appears I have. I am still reluctant about surgery since most methods seem to be permanent and irreversible--I am not sure what the benefit is of having a permanently closed ET tube is over a permanently open one since the normal ET opens and closes in order to pressurize the ear. I am anxious to talk to someone that has had surgery and have them tell me what they feel. I think one of our participants called Lib is doing that Aug 9-2004 so lets hope for the best for her. Have you read her posts? She seems to have had the problem for along time also.[/QUOTE]
hi petpeeve,
its lib, just wanted to let you know nathan no longer has pet, he had an injection by dr poe and hes fine as far as the pet is concerned, if you look at his old posts he talks about it, hope i am as lucky as him, keep up the good thoughts. lib

petpeeve 07-26-2004 11:42 PM

Re: Eustachian Tube Catheter
 
Hi Lib: Thanks for the note about Nathan. That is great news that his PET is gone. I am still working my way through all the posts and will look for his feedback about after surgery. Do you know which thread it is? I know your surgery is coming up soon. You must be excited and hopeful. I will be anxiously waiting for your recovery and log in to let us all know. Could you tell me if your PET has affected your speech quality and social interaction? I keep trying to find a post from others that talks about the difficulty of speaking in public settings where it is noisy but can't find anyone talking about that. Everyone says PET drives them nuts but I am not sure if it is the snapping noise or speaking itself. I get so frustrated because even a soft voice sounds like it is booming in my head and I find myself just trying to be quiet as much as possible. Please let me know if you have similar symptoms? I will go online and check out the Boston doctor also and see if I can contact him and get some more info. Wish the health board allowed us to contact each other because it would be nice with the friendships that we form from this similar disorder to do things like send "get well" cards and other notes. Guess I will just have to do it via posts!!


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