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Hello AJN - So sorry you are suffering like the rest of us PET people. An ENT can diagnose PET by watching your eardrum as you breath in and out of your nose. It can be seen only if your ear is patulous at the time - hearing your breathing and voice in your head. The eardrum will move in and out when autophony is present.
Excercise and caffeine can make patulous ears worse, as can hormone replacement therapy. The later can bring it one, when a person has had no signs of it before. The ear can go back to normal after excercising, when the heart slows down back to normal.
The expert in patulous Eustachian tube is Dr. Dennis Poe, in Boston, Mass. in the United States. There are other doctors around that have studied and learned under him.
If I were you, I would check at the universities where you live, in all of Australia if necessary, to see if there is an ENT who has studied with Dr. Poe and learned his methods of trying to correct PET. There are a few surgical options. People react differently to the different options. What works for one person, may not another.
I have had seven surgeries and am still not autophony-free, but have improved, even going as long as 21 months without any symptoms.
Dr. Poe specializes in the cartilage graft method. That is taking cartilage from the outer ear or inside the nose and placing it in the tissues or muscles surrounding the Eustachian tube. This surgery is done through the throat, and not through the eardrum. Dr. Poe believes in non-invasive surgery. The method that has worked best for me has been solid catheters in my Eustachian tubes, which I currently have. They consist of hospital tubing that is used when being hooked up to an IV. This tubing is then filled with bone wax to make a solid stick like thing.
I have lichen planus, which is an autio-immune disease. We are guessing that it made its way into my ears a year ago, causing my autophony to come back. But I am being treated for that, so hope to get back some relief.
Dr. Poe has improved on the catheter idea and has invented more custom made, what he calls shims. They will come in different sizes and shapes to fit peoples' Eustachian tubes much better than the plastic hospital tubing catheters that I have. Also, these shims will open up like an umbrella at the top of the Eustachian tube to prevent the shims from sliding down the Eustchian tube.
These shims have been submitted to the Food and Drug Administration here in the United States for approval. There is always a wait once an invention gets there. But once these shims are approved, it will be a very exciting time for PET people.
Dr. Poe says that after the testing period, which will be done on many people before they become available to the world, will be simple to place by any ENT, anywhere in the world. They will be cheap. He told me that a year ago, so unless things have changed, AJM, you can hope an ENT where you live will have access to getting them for you, if you still need them then. And who knows how long they will take to get to that point.
Hopefully, after testing them on different people, the access to them will be fast.
The way things are now with me, even though I am greatly improved, I will be eager to have the shims placed.
I have to say with the catheters that I have now, there is a risk of total Eustachian tube blockage, which would require a ventilation tube in the eardrum. I have had them for three years, which once I got used to washing my hair in the bathtub everyday, have been no big deal.
Like you, I feel like I have a sheet over my ears as far as hearing goes, but my hearing tests don't show that as affecting my hearing. But I know PET affects my hearing without a doubt. When I have autophony in both ears, my hearing is so distorted.
I have written way too much so had better end now. Please know that there is hope. The Eustachian tube can also be obliterated to stop autophony. It is an option I keep in mind for myself, if the new shims don't work for me. But, obliteration is permanent. You do not need to 'just live with it,' like I have been told by many doctors.
I have heard that Patu-end drops work for some people. I tried those a few years ago, but they gave me such a headache I couldn't see straight. They are made in California. Other advice that Dr. Poe gives is to stay hydrated, and use saline nose spray to keep the Eustachian tube moist. Also, do not use antihistimens (spelling?), or anything else that could dry out the ears.
Please ask any questions you have, at any time. I have been through a lot and have the best doctor, Dr. Poe to help me. I live across the USA from him, so have to fly to see him. But he's worth it. He is the greatest doctor I have ever known. He will answer your questions if you email his office in Boston.
You will not have this forever if you find the right ENT. If you feel like you would like to see Dr. Poe in Boston, make your appointment now. He books way out.
Please let me know how you are doing.
Many hugs - Cathy
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