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Old 08-18-2010, 01:19 AM   #1
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armarama HB User
PET + myringotomy = nightmare

..HI MATE sory you are going through this..believe it or not i have gone through exactly the same and still am getting worse by the day...gromits fitted and no fluid ect..dry like feeling in the throat and ears... gromits..wich have made me worse.i am now feeling suicidal over my condition and actually feel mad in the head so you are not alone ..the ent docs are useless.and so are there antibiotics wich cant cure PET anways.they keep saying oh yes it must be a infection..BULL..IT IS PET.i can even tell them that..i have bucket head feeling,,echos..talking quiet/loud..very high tinitus.poping on swallowing and severe heartbeat pounding in my left ear..feel like my head is full of air or something...i am at my wits end here and 4 out of 7 i actually sit and cry .i am 37 and have a partner and another child on the way ..im sure she thinks im insane ..my life doesnt feel like worth living.the docs wont listen..if anyone reads this and has some kind of answer or direction for us sufferers ..please help ..id give my arm or leg to be normal again...arma of ********** northeast

Last edited by moderator2; 08-18-2010 at 03:40 PM. Reason: try to avoid leaving huge quotes in your posts

 
Old 08-18-2010, 03:28 PM   #2
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Re: PET + myringotomy = nightmare

Hi Guys, Well I understand what you guys are going through!! I have had PET for almost 7 years now, and trust me its not been easy. All of your above mentioned symptoms are exactly what I have as well. And due to similar causes as well.
But what can we do..nothing..as of now. Myringotomy, Tympanoplasty, Patul-End, Grommets, Tubes, nothing works unfortunately to help cure PET. I know its discouraging, but its just the way it is. Only a very few "lucky" ones have got relief by the above mentioned treatments. But only a few.
Ok, however, there is HOPE!! Dr.Dennis Poe, in Boston, is an expert in PET, He has been working extensively for years to come up with a solution for PET. He has invented the Cartilage Graft Surgery, which is essentially, is taking a piece out of your earlobe and wrapping the Eustachian tube with it, to thicken/strengthen it. Again, it has worked for a few people only, not a permanent solution. BUT, he is also working on Customized vent tubes, which he will put in the ET, which will be long lasting and if one is lucky, permanent. He has to get the specs and designs approved by the health dept. But this actually could work.
Those of you who are willing and able to travel to Boston, must go see Dr.Poe. The surgeries are expensive and irreversible. So theres a risk there.
But he's worth having a chat with. As of now, he is the arguably the ONLY person who can help people with PET.
I am in India myself, so I cannot go visit him. But has has been kind enough to talk with me over the phone.
Also, Yoga helps with stress, breathing and relaxing the mind. And over time, also helps with PET. You can try some techniques like "Pranayam", "Surya Namaskar" . Look them up on the web.
You guys can also read Fluffyshouse's posts. She has been a patient with Dr.Poe as well, and also a dear friend now.
Hope you guys feel better, and try to be strong!!
Best,
Kunal

 
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Old 09-20-2010, 08:20 AM   #3
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Re: PET + myringotomy = nightmare

Hi there,

I can relate to what you are going through as I suffer from bilateral P.E.T. and understand your frustration. I have seen countless doctors who seem clueless. I took matters into my own hands and after a significant amount of research found Dr. Dennis Poe in Boston. There is no one better to see on the planet than this man about this miserable condition.

 
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