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PET + myringotomy = nightmare

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Old 11-23-2009, 08:17 PM   #1
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PET + myringotomy = nightmare

This is my first post to the boards. I've really appreciated all the comments and stories of fellow sufferers.

It all began after taking a plane flight a year ago while suffering with a cold. After extreme pain in my right ear on landing, I used a bunch of Afrin and survived the second leg of the flight. But even after getting over the cold, I still had that blocked feeling in my right ear that was worse with exercise, etc.

I finally went in to see an ENT in March. She did the usual treatment -- antibiotics, steroids, nasonex. None of it helped and she offered one last option -- a myringotomy in case there was still fluid behind the eardrum.

Hoping this would finally be a solution to this seriously annoying situation, I went ahead and tried the myringotomy. She didn't insert tubes; just the myringotomy. It was very painful -- I'm not sure if something went wrong with the anesthetic or what. There was no fluid behind the eardrum and no improvement in the blocked feeling. Afterwards, she gave me Ciprodex drops with no instructions about how to use them. I ended up using them for 8 days. After about a week of agony and obsessive internet searching, I went back to the ENT one last time and she finally slowed down enough to listen to what I was saying. She finally thought to mention that it might be a patulous eustachian tube (PET).

It's now been a month since the myringotomy and it still hasn't healed. I finally went to a neurotologist who tried a paper patch over the perforation. He says extended use of the drops is probably to blame. Apparently, you're only supposed to use them for about 3 days. Basically, the combination of a wide open eustachian tube and now an open eardrum have turned my life upside-down. This truly has been the worst month of my life. Before the myringotomy, I just had problems with autophony while talking -- now I hear my heart beat, breath sounds, everything.

I'm now contemplating a tympanoplasty to fix the eardrum, but the thought of more pain and suffering and STILL not fixing the PET is just beyond depressing. Plus, there's a risk of losing some hearing. At least through all this my hearing is fine -- as long as I don't talk, or breathe, or move.

I know I've read that some doctors recommend the myringotomy and tubes for PET. To me, this is just insane. I can't imagine how this could improve matters.

Does anyone know anything about tympanoplasty -- pros and cons? I really want to try the Premarin drops or the PatulEND, but I basically can't do anything until my eardrum heals.

Thanks for listening.

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Old 12-13-2009, 07:17 PM   #2
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Re: PET + myringotomy = nightmare

I hope you are feeling better. Out of curiosity do you have any dizziness or vertigo sensations with this? Just wondering because I am having ear trouble too.
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Old 12-14-2009, 07:51 PM   #3
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Question Re: PET + myringotomy = nightmare

Hi.....when I read your post I thought I was reading about myself! I too flew home, in Feb. 2009, from Arizona with a cold. Upon landing my whole head plugged up and I couldn't hear a thing! I went to my Dr and he gave me an anti-biotic which made me very very ill. After months of acupuncture, neti pot, aromatherapy, 2 rounds of anti biotics, cranial sacral massage, herbal ear nose and throat, Nasonex I finally had the ear tube surgery about 10 days ago. I can finally hear better(no more sounding like I'm in a tunnel) but the crackling and popping, while swallowing, continues. My ENT said that this would eventually go away but I'm not so sure.....He did give me a RX for Flonase and I'm on my 4th day so far. Sometimes my ears just crack and pop, on their own, without me even moving my mouth or jaw. I do have TMJ that is related to Fibromyalgia, but this is a different noise altogether. I sure wish I knew the answer too!!!


Old 02-22-2010, 08:05 AM   #4
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Re: PET + myringotomy = nightmare

I hope your ear drum has healed by now. I too had the same problem, however from different causes. Once the drum has healed you may get some relief from PET. I did not. I tried the Patulend drops which worked temporarily but hurt so badly I could not continue using them. I started experimenting with just nasal saline using the same technique to guide the saline toward the eustachian tubes. The drops close the tubes for a while and for me it is enough relief to get me through the day. It has been two years now since the PET began. I still have hope that they condition will resolve at some point. I hope this helps you.

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