Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Quote:
Originally Posted by benmaggs
I have had the tubes up/down my nose. But as far as I know they have not been near my eust. tubes.
I also have had scopes thru the nose (nasopharyngoscopy) twice by my local ENT. He is the one who felt I had bilateral PET, since my eustachian tubes were open on both sides. However, the good Doctors at House Ear Clinic (supposedly the best in the West) felt that this was not definitive for PET and recommended seeing Dr. Poe. Very frustrating dealing with all these doctors. Hopefully Dr. Poe can at least give me a definitive diagnosis, make suggestions, or at least tell me nothing can be done. We will see.
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Hi Everyone,
I just returned from Boston where I met with Dr. Poe. After several tests and a long discussion with the doctor, I finally got my definitive diagnosis. There was GOOD NEWS and BAD NEWS. The good news was that I do not have PET. The bad news was that I do not have PET (which might have been treatable). Dr. Poe felt I had inner ear nerve damage which might have been brought on by a virus or the blood buildup between the brain and the skull prior to my surgery for subdural hematoma. Research on my problem is currently being done on mice but is several years away for anything meaningful. Also, I felt very good about Dr. Poe and would highly recommend him. As for now, I will look into alternative medicine such as acupuncture. Also a sophisticated (and expensive) hearing aid with filtering capability might be of some help.
Anyhow, unless one of you has any other ideas, I will be dropping out of this particular Healthboards thread. I wish the best of luck to all of you.
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
Quote:
Originally Posted by hedylarue
Actually, I've had a few people tell me it was effective for them. You are right though that the majority seem unhappy with them.
The problem is that there are so many different symptoms people have with PET. Some people only have autophony and other people...like me....have tons of pressure, clicking and popping. If I only had autophony, I feel certain that I would feel pretty normal now because the Patulend is very effective on that. Not so much for the other symptoms, which are what I was considering the grommets for. Although I have been encouraged that the other symptoms just take longer to go away and I should persist with the drops....which I am doing.
Anyway...it seems that everyone has different symptoms and different causes so different treatments are in order. Maybe there is no official cure, but there are definitely many effective treatments to try and there are definitely people who consider themselves cured. I hope you don't give up!
Thanks for the advice and opinion though. In the end, it probably is wisest to wait, it's just really hard!
hedylarue.
Since your last post in July 2010 regarding the patulous eustachian tube disorder and your appointment with Dr. Poe in Boston. Have you seen Dr. Poe? If so, was the visit and or procedure, if you had one, successful?
Re: Patulous Eustachian Tube and Ear Tubes...Good or Bad Idea?
I have to say, its nice to find a group of people who suffer the same problem as me! I'm still in the process of being fobbed off by ENT specialists who aren't interested, but hoping to get somewhere!!
I've been reading all the old posts and all the info I can find on the net, there seems to be a lot of ideas but no certain cure? After reading an old post I thought I would give salt water a try and dropped some down my nose with my head tilted back and to the right as it is the right ear I suffer with. Two hours later and its still working reasonably well! I don't expect it to last obviously but for temporary relief I would recommend it. Has anyone else been having any success with anything?
Also I saw a previous post in this thread about electrolyte water, I often feel thirsty even though I drink a lot of water, has anyone tried this and what's in it?
