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  • PET: management and surgery

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    Old 10-03-2007, 09:52 AM   #31
    clouthier
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    Re: PET: management and surgery

    Hi everyone,
    I'm also a PET sufferer but from Canada. I'm reading about all your experience and would like to know if there is anyone from Canada who could help me find a Doctor that could help me? Can anyone help?

    Thanks

     
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    Old 10-05-2007, 10:10 PM   #32
    renjoebra
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    Re: PET: management and surgery

    Hello everyone! I'm new to the site and I've been told by my doctor that I have a defective eustachian tube. I'm guessing from all the posts that it's PET and my doctor has a call into Dr. Poe. His name is the first and only name that my doctor mentioned on who to see. I have seen that many of you have mentioned a tube through your ear drum but I already effectively have that since I have a hole in my eardrum already. I've lost 55 decibals of hearing and he says only 5 of it would be from the hole. He covered the hole today with a piece of zigzag paper to help bridge the gap for the cells to heal themselves. If the hearing my own breathing, speech and heartbeats is helped by the piece of paper covering the hole and hole doesn't heal, then I will be having surgery to close the hole. We have also been told by Dr. Poe about Patulend and I may be ordering some of that soon. My PET (this is what I truly believe it is) is to the point that I have it pretty much everyday and almost all day long (as long as I'm not sick and tube is swollen shut from a cold). I don't let it change anything in my life itself but it's quite annoying since I can't tell how loud my voice comes across to other people because it always sounds loud to me and sounds like i'm talking in a tunnel or something. Plugging my ears doesn't help. I still hear the breathing and hearbeats. External sounds don't bother me unless someone talks right into my ear. It vibrates and hurts my ears. This last symptom might not have anything to do with PET but my ears also bother me when I drive and someone rolls down the rear windows. The PET is in both ears for me with the left ear being the worse (that's also the ear I have hearing loss in and the whole in the ear drum) but it's the right ear that I have problems with when the windows are down in the car. Sounds weird but I'm glad to have found this place to have someone to talk to about this. My name is Renee, by the way!

     
    Old 10-16-2007, 05:07 AM   #33
    vanillachick
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    Re: PET: management and surgery

    Hi Everyone,
    I have recently figured out that what I have been suffering from for the past few months is PET. It's discouraging to find that there doesn't seem to be that much of a solution to the problem. Has anyone tried Patulend drops? I'm looking for a way to manage this for a while without surgery. So far putting my head down helps close the ET, but it's awful by the end of the day. Also, does anyone expeience pain with their PET?

     
    Old 10-22-2007, 09:09 PM   #34
    fluffyshouse
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    Re: PET: management and surgery

    Hello Vanillachick and every other PET person out there,

    Dr. Poe in Boston is the very best doctor to see for PET. There is no other that can do what he can do. He is always thinking of a better way of fixing PET. He invents his own instruments just to better his methods of fixing PET.

    I have had four PET surgeries from Dr. Poe. I am one of the most difficult patients he has had. In the past, he has been trying to fix PET from outside the Eustachian tube. He'll use either a silicon plug or a cartilage graft. I have had all of those and they didn't work, even though they have worked on other people. His latest method of choice is a piece of tubing that is solid placed inside the ET. It is not the tubing that Dr. Shea in Tennessee uses. Dr. Poe operates through the mouth and up the throat, the most non-invasive way. That is how he placed the tubing in my ETs three weeks ago.

    Both of my ears were very bad, in spite of the previous three surgeries all within the last 18 months. Like I said before, I just had my fourth one three weeks ago. I am happy to say that my right ear is almost all fixed from PET. It has just a slight bit but so much improved that it's not really worth mentioning. My left ear needs another try with the tubing. I will be going back in the near future. I won't give up.

    Dr. Poe really cares about his patients and will do what he thinks is best for that patient.

    I tried the Patulend drops, which didn't help but gave me huge headaches. but I know that it has helped some people. I tried the Premarin nose drops and drops in juice. All of this was done before going to see Dr. Poe. He wants PET people to try these things before seeing you. They could help you without having to go through surgery.

    Dr. Poe books very far in the future, but he's worth the wait. He is the kindest, most caring doctor and person I know.

    I feel like he is my only hope for fixing my PET. I recommend him highly. You will need a recommendation from your doctor in order for Dr. Poe to see you. With him booking so far out, I would get that appointment. He's the best.

    One more thing, I have to fly for over four hours to see him.

    Cathy

     
    Old 10-23-2007, 09:45 AM   #35
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    Re: PET: management and surgery

    Vanillachick,

    I forgot to respond to your question about anyone else experiencing pain with their PET. I have. Dr. Poe, the first time I went to him, said the pain was caused by TMJ. I was clenching in my sleep in response to the stress of PET. I also would catch myself tightening my jaw muscles during the day when I had autophony.

    PET itself, doesn't cause pain. But I had earaches and pain in and around my ears so I thought it was PET. It was TMJ.

    My dentist fitted me for a mouth piece that I wear at night. The mouthpiece fit just on my two top teeth. And I take clonazapam at bedtime to relax me so that I don't clench. It took months for the pain and earaches to go away, but they are both gone except for an occasional earache that lasts only a few minutes.

    That might be something you will want to look into. Dr. Poe patiently felt around my ears, front and back and around, and hit a spot on both ears that sent me to the ceiling. That was the TMJ.

    I hope this helps.

    Cathy

     
    Old 10-23-2007, 10:35 PM   #36
    petear
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    Re: PET: management and surgery

    Hi

    I have had PET symptoms for 11 years, the autophony and breathing sounds, my ear is normal most the time and then it cracks and clicks and I get the PET symptoms, then I will try to get rid of it by pressing up under my neck and tilting my head etc.. Moving my jaw from eating and talking will sometimes cause the click and bang I get the symptoms, sometimes my ear is good for extented periods, then I know it's going to get bad when it feels kind of pins and needles and it starts to flutter, I wonder from reading Libs threads if I might have Mycolonus, I have an appointment with the best ENT I could find in my area on Nov 7th (third one) if anyone has any tips for me let me know..

    My PET is also better when I get a cold, but not from putting on weight.

     
    Old 11-01-2007, 12:26 PM   #37
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    Re: PET: management and surgery

    I think the reason for the PET being better when sick is because your body is swollen causing the ET to close better. I also feel better during summer when it's hotter for the same reason. Now that's it's getting colder my PET affects me more often and for longer in the day.

    Last edited by renjoebra; 11-01-2007 at 12:32 PM.

     
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