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Old 10-11-2011, 11:29 AM   #76
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hello Miguel,

I am again considering obliteration of my E tubes. But after rereading your post of last July, I am confused and don't know what to do. I have put in a call to Dr. Poe to get more answers.

How are you doing today with the ear glue or any other problems related to the obliteration you have had? Thank you for any answers you can give to me.

Cathy

 
Old 10-27-2011, 01:40 PM   #77
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

I also have the same problem and I am seeing Dr. Poe in 6 months. Please let me know what the outcome of your appointment is. Are you an American - I am a Canadian and understand that all this expense will come out of my pocket as it's not covered by OHIP.

 
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Old 10-27-2011, 03:59 PM   #78
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hello,

I am sorry you have PET, too. I hope you can get something out of your insurance company if you have surgery by Dr. Poe. I am not ready for obliteration yet because of possibly trading one problem for another. Good luck to you.

 
Old 11-17-2011, 08:14 AM   #79
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Quote:
Originally Posted by benmaggs View Post
I also have the same problem and I am seeing Dr. Poe in 6 months. Please let me know what the outcome of your appointment is. Are you an American - I am a Canadian and understand that all this expense will come out of my pocket as it's not covered by OHIP.
I was living in Ontario at the time and had OHIP cover my visit. What you need is a referral from an Ontario ENT specialist to see Dr. Poe and have it submitted to OHIP for approval. The problem is that most ENT's in Canada do not support the procedure or are familiar with it.

See Dr. Lorne Parnes in London, ON for the referral. He is familiar with Dr. Poe and the catheters and he will submit a referral to OHIP for you. The 6 hour drive to see him to get the referral was worth it considering the consultation and surgery was over 10K.

 
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Old 11-17-2011, 09:33 AM   #80
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

The catheters are the way to go. I had one put in one of ears in August, and one put in my other ear two weeks ago by Dr. Poe. These are my fourth pair in tfour years. But everytime Dr. Poe changes them, I have no more autophony for awhile, even up to two years. Some people that I know of, have had theirs for six years.

There are still the shims that Dr. Poe is going back and forth with the FDA on. When those are available, getting rid of our autophony will be even better.

Good luck with your appointment with Dr. Poe. I hope you have scheduled a surgery time within a few days of your appointment. That way, you won't have to go to Boston twice.

Let us know how your appointments go with all of the doctors you might see.

Benmaggs - I never answered you regarding where I live. I live in the western United States, so getting to see Dr. Poe requires a five hours plane ride. He's worth it, though. He is the only one to see in my opinion.

Cathy

Last edited by fluffyshouse; 11-17-2011 at 09:36 AM.

 
Old 11-17-2011, 12:34 PM   #81
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Quote:
Originally Posted by andr3w View Post
I was living in Ontario at the time and had OHIP cover my visit. What you need is a referral from an Ontario ENT specialist to see Dr. Poe and have it submitted to OHIP for approval. The problem is that most ENT's in Canada do not support the procedure or are familiar with it.

See Dr. Lorne Parnes in London, ON for the referral. He is familiar with Dr. Poe and the catheters and he will submit a referral to OHIP for you. The 6 hour drive to see him to get the referral was worth it considering the consultation and surgery was over 10K.
Thanks so much, what great news. I have his phone # here in front of me and will call for an appointment. Hopefully I will get the funding and ultimately some relief. This is a horrible way to live.

Again, my sincere thanks.

Carole M. - Toronto, Ont.

 
Old 11-17-2011, 01:25 PM   #82
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hello Carole,

The autophony killed my life as I knew it almost seven years ago. I hope you can scheduled both the appt. and surgery in the same trip. I hope, too, that you can get insurance approval for the procedure. It is quite expensive. I am lucky that our insurance covered all my surgeries 100%. I hope yours will do the same.

But insurance or no insurance, living with autophony can not be the way to live. So if you can afford it, I hope you will have it done anyway. Or wait until the shims are approved whenever that may be. You can talk to him about it when you see him. He may have good news about them by the time you see him in six months. I hope so.

Keep me updated on your progress or if you just want to vent.

Hugs,

Cathy

 
Old 12-10-2011, 11:04 PM   #83
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Fluffyshouse,

You seem to be keeping this thread going with the most recent posts. I hope to take advantage of your knowledge about PET and Dr. Poe. I first posted to HealthBoards on 5/16/11 under the name bonniedaddy. If you do a Google search under that name, you will get a summary of my symptoms. The most bothersome symptom is resonating in both ears when I talk but also while listening to the TV or other people talking. Also ear fullness is pretty constant.

My local ENT has diagnosed me with bilateral PET based on a nasopharyngoscopy. However, the Doctors at House Ear Clinic in Los Angeles say that my symptoms are not entirely consistent with PET since my tympanogram was normal. My own research found a medical journal article that stated a normal tympanogram did not necessarily rule out PET.

The earliest appointment I could get with Dr. Poe is not until February. Have you had any experience with anyone on Healthboards having similar symptoms? Your input would be greatly appreciated.

 
Old 12-11-2011, 11:30 AM   #84
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hello,

We are all different with our PET. PET doesn't always show up with tests no matter what the test is. I had a CT scan this last summer (one of many) and it showed one of my Eustachian tubes was patulous. That is the only test that I have had that actually showed it that I have PET. I had a doctor tell me once that if you think you have PET, then you do.

If you are hearing your breathing and your own voice booming through your ears really loud, then I would say you have PET. Otherwise, I don't know what you could have. There are several other things that plague the ears.

Dr. Poe will be able to give you more answers. He is the best for PET. Not only is he the expert on PET, but he is the most caring doctor. If you recently made your appointment to see Dr. Poe in February, I would consider yourself lucky, because I have heard of others who have to wait six months to see him.

I have read and corresponded with many people, all having different symptoms.

Dr. Poe advice to all people is to never blow your nose hard, and never stifle (sp?) a sneeze. Those two things are really bad for the ears.

Best of luck to you.

 
Old 12-11-2011, 04:31 PM   #85
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Quote:
Originally Posted by bonniedaddy View Post
Hi Fluffyshouse,

You seem to be keeping this thread going with the most recent posts. I hope to take advantage of your knowledge about PET and Dr. Poe. I first posted to HealthBoards on 5/16/11 under the name bonniedaddy. If you do a Google search under that name, you will get a summary of my symptoms. The most bothersome symptom is resonating in both ears when I talk but also while listening to the TV or other people talking. Also ear fullness is pretty constant.

My local ENT has diagnosed me with bilateral PET based on a nasopharyngoscopy. However, the Doctors at House Ear Clinic in Los Angeles say that my symptoms are not entirely consistent with PET since my tympanogram was normal. My own research found a medical journal article that stated a normal tympanogram did not necessarily rule out PET.

The earliest appointment I could get with Dr. Poe is not until February. Have you had any experience with anyone on Healthboards having similar symptoms? Your input would be greatly appreciated.

 
Old 12-11-2011, 04:33 PM   #86
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benmaggs HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi there. You are seeing Dr. Poe in Feb. I'm seeing him in April and I have been waiting over 2 months already. How long have you been waiting? Seems odd that I was given 6 months to wait!!!

 
Old 12-11-2011, 09:35 PM   #87
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bonniedaddy HB User
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi,

I apologize if I gave the impression I have just made my appointment with Dr. Poe. I actually had made my appointment in mid-August.

 
Old 12-12-2011, 06:39 AM   #88
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Thanks. I am always interested to hear how people make out with Dr. Poe as I live in Canada and it's quite an expense (a lot out of pocket). Would pay anything to get my EDT corrected however. Can you give me a detailed explanation of your problem(s) so we can compare? I would love to hear from you and follow-up with your visit and pending surgery or whatever.
Sincerely, Carole M. (Toronto, Canada).

 
Old 12-12-2011, 11:25 AM   #89
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Carole,

I also will have the expense of flying to Boston from Los Angeles. February in Boston will be cold, but like you say, worth it if Dr. Poe can help.

Since my original post on HealthBoards back in May, I have been doing a lot of my own research as well as follow-up visits to my local ENT and several Doctors at the House Ear Clinic in Los Angeles (supposedly the best on the west coast). None have been able to help me and they have recommended I see Dr. Poe. My dilemma is I am not sure if I have bilateral Patulous Eustachian Tubes since my symptoms do not entirely correspond to PET.
Following is a summary of my condition and what I have tried. I apologize for the long posting, but if you or anyone else on HealthBoards have similar symptoms and have tried various things, perhaps between all of us, we can get closer to finding a solution to this distressing situation.

SYMPTOMS (Since November of 2010)

1. Echoing, resonance, and/or distortion of sounds from other people speaking or from TV. (Hearing as if in a barrel or metal bucket.). This is my most distressing symptom.

2. Autophony – Not sure what this means in terms of hearing ones own voice. My voice has a husky sound to it and resonates when I talk. (NOTE: I do not hear my own breath sounds or other bodily sounds associated with PET except when chewing something crunchy like almonds.)

3. Aural Fullness

4. Possible tinnitus but at low frequencies. Generally feel fine in a quiet room.

5. Hyperacusis/Recruitment - Increased environmental of many sounds especially at certain frequencies. (e.g. a cart being rolled, clattering of dishes, or a truck driving by.)

6. Muffled hearing/hearing loss especially if any other ambient noise (e.g. restaurant)

7. Roaring noise in the ear. Riding in a car produces a constant roaring sound from any road noise primarily while the car is moving.

DIAGNOSIS BY VARIOUS DOCTORS

1. Original diagnosis by House Ear Clinic was Cochlear Hydrops. Took diuretic and was on a low salt diet for 3 months. No improvement. MRI ruled out an acoustic neuroma. Except for the MRI and audiology tests, no other obvious testing was done by House Clinic after 5 visits.

2. Two nasopharyngoscopies (done by my local ENT). Diagnosed as Bilateral Patulous Eustachian Tube.

3. Doctors at House Ear Clinic questioned whether I had PET since my symptoms were not entirely consistent with PET and my tympanogram was normal. They felt that openings at the entrance to the Eustachian Tube were not always definitive for PET. (NOTE: According to a MedScape article by Dr. Ted Tewfik of McGill University Medical School, a normal tympanogram does not preclude the possibility of a patulous tube.)

4. I have tried taking PatulEND, a nasal solution for the treatment of PET provided by Dr. Di Bartolomeo of the Ear Foundation of Santa Barbara with no noticeable improvement. I am currently taking Premarin nasal solution prescribed by the House Ear Clinic, again with no noticeable improvement.



POSSIBLY RELATED SYMPTOMS ACCORDING TO MY RESEARCH

1. Neck Pain/stiffness since 2009. Pain on bone behind the ears if pressure applied.

2. GERD/ Larynx Pharanx Reflux (LPR). I take Prilosec OTC daily. (Possible relationship in article by Dr. Poe.)

3. Bilateral subdural hematoma surgery in January 2010. Unknown cause. Currently taking anti-seizure medication (Kepra generic)

4. Hoarseness/Clearing of the throat

5. Weight Loss – Lost about 10 pounds (unexplained) from December 2010 to February 2011. Gained all of it back and have maintained my weight since June.

6. I had hormone therapy and radioactive seeds (brachytherapy) related to prostate cancer in 1998. (Possible relationship in medical journal article.)

7. Dental work end of August 2010 in which a gold crown was put on a wisdom tooth.

8. I also have peripheral neuropathy (neuromuscular disorder?)

9. Sneezing/Runny Nose. Started a few weeks ago and is not related to having a cold.

10. Possible scleroderma. Although rare in men, my sister died from it at the age of 39. A journal article stated that a significant prevalence of bilateral patulous Eustachian tube was noticed in patients with scleroderma. I plan on being tested soon for this condition.

Let' keep this thread going.

Marty

 
Old 12-12-2011, 11:30 AM   #90
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Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?

Hi Fluffyshouse,

Please see my recent reply to Carole M. Thanks.

Marty (bonniedaddy)

 
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