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Eustachian tube dysfunction and balloon dilation

Posted by jcj123 @jcj123, Oct 2, 2024

I lost my hearing to SNHL on left side 9 months ago. I tried everything possible including hyperbaric oxygen therapy. This therapy messed up both my ears and my eustachian tubes did not open after treatment. So I am totally deaf in left ear but my right ear I can hear everyone else clearly but my own voice is muffled. Five days ago I had balloon dilation surgery to open my eustachian tubes in both ears. Here are my questions:
1. Why is my own voice muffled? ( I can't seem to get an answer to this)
2. It's only been 6 days since the surgery but I feel absolutely no better nor any improvement. Will this surgery work?
3. What would the next step be for me? I can't live with closed eustachian tubes, can I (I don't want to because I'm uncomfortable 24/7)
4. I can't seem to get any answers, it's like I'm the only one in the world that this is happening to. I do have appt with surgeon tom for follow up so I'll ask her but she was against tubes because she said I only had one good ear and she didn't want to risk anything happening to it and losing my hearing in that ear too. So what would the next step be?
Every place I ask on line, I get no response. So thank you if you can help.

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rdschicago | @rdschicago | Mar 10 10:15am

Good luck! I saw Dr. Poe years ago for the same issue as my ears chronically felt stuffed and I had to perform the valsalva move several times per day to make my ears pop. Ultimately I was informed it wasn’t ETD.

Keep us informed please.

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1 reply
delweb98 | @delweb98 | Mar 10 10:27am
In reply to @jcj123 "So sorry to hear so much trouble and no solutions. I wanted to update since it's..." + (show)
@jcj123

So sorry to hear so much trouble and no solutions. I wanted to update since it's been awhile. The dr at LIJ in New Hyde Park (head of ENT) DID give up on me. She referred me to a Eustachian tube "expert" specialist in Boston (5 hours away) So I called them because I can't give up. They want me to send all the records of my last 3 doctors I've seen regarding this issue. He'll read them and decide if he'll see me! ;(((( He's supposed to be good. His name is Dr. Allan Poe I think. Anyway, someone in his office who I spoke to told me there's a dr in NY who worked with him and has the same expertise and I should try her first since I live in NY. Well, that was nice of her. So that's who I'm seeing now, this dr in NY. (still collecting all my records) I saw her 1/2. I liked her. She sent me for a CT scan (which no other of the 8 doctors ever did) and then a VEMP test. I'm seeing her tomorrow (3/10) and see what she says. I will be a very strong advocate for myself tom because I don't think she's addressing or listening to my most distressing issue which is the ETD. I will update. Meanwhile no hearing or very little in left ear, hear screeching noises maybe due to residual hearing which isn't translating to words, horrible tinnitus in left ear, Eustachian tube dysfunction in both ears, can hear well out of right ear but MY OWN voice is muffled. Thanks so much for reading all this :)))

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Please tell me the name of the Dr in NY that Dr. Poe said she worked with him. I have been in the same condition as you with no help for 4 yrs.

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1 reply
jcj123 | @jcj123 | Mar 11 6:51pm
In reply to @maygimelli "hi, I am wondering how you are doing. My symptoms are different than yours, but I..." + (show)
@maygimelli

hi, I am wondering how you are doing. My symptoms are different than yours, but I am also feeling like I am the only person in the world going through this. My ears and head feel pressure building whenever I am anywhere with air differencials (HVAC, fans, air filters, a windy day). It's maddening. Have you had any more procedures or treatmnt?

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Hi! Wow! I feel exactly like you! When I'm outside walking or it's windy I also feel the pressure and the fogginess (probably not the right word) I went to a new doctor and she didn't do anything to help me either. NO ONE understands. These doctors don't know what to do. I recently had a CT scan, a Vemp test, and and ECOG test. All fairly normal according to doctor. Well, why then is my voice sound so far away? Why do I hear clicking and popping in my "good " ear all day long? She said it's a coincidence that losing my hearing in left ear and whatever is going on with my right ear happened at the same time. I don't buy it. Looking for another "expert"

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jcj123 | @jcj123 | Mar 12 4:29pm
In reply to @delweb98 "Please tell me the name of the Dr in NY that Dr. Poe said she worked..." + (show)
@delweb98

Please tell me the name of the Dr in NY that Dr. Poe said she worked with him. I have been in the same condition as you with no help for 4 yrs.

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The Doctor in NY is
Dr. ChandraSekar
18 East 48th st
2nd floor
646 949-2300
She didn't really help me although she did have me do some tests like a CT scan and a Vemp test that no other dr ever asked me to do. She also suggested I get musician ear plugs for the horrible screeching noise I'm hearing in my deaf ear. She didn't do anything to help my right ear unfortunately and this is my biggest concern right now. I hope you have luck with her.

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jcj123 | @jcj123 | Mar 12 4:31pm
In reply to @rdschicago "Good luck! I saw Dr. Poe years ago for the same issue as my ears chronically..." + (show)
@rdschicago

Good luck! I saw Dr. Poe years ago for the same issue as my ears chronically felt stuffed and I had to perform the valsalva move several times per day to make my ears pop. Ultimately I was informed it wasn’t ETD.

Keep us informed please.

Jump to this post

Did you like Dr. Poe? Did he help you in any way? Thanks in advance for your response

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rdschicago | @rdschicago | Mar 12 6:33pm

I liked him a lot, but unfortunately, there was nothing he could really do for me because he told me the root of my problem was not eustachian tube dysfunction. Also, from Meniere’s disease, I am deaf in one ear and he said that based on that, he and other surgeons would almost never be willing to operate on the hearing ear, since if something went wrong, then the patient would be totally deaf.

REPLY
1 reply
jcj123 | @jcj123 | Mar 12 8:43pm
In reply to @rdschicago "I liked him a lot, but unfortunately, there was nothing he could really do for me..." + (show)
@rdschicago

I liked him a lot, but unfortunately, there was nothing he could really do for me because he told me the root of my problem was not eustachian tube dysfunction. Also, from Meniere’s disease, I am deaf in one ear and he said that based on that, he and other surgeons would almost never be willing to operate on the hearing ear, since if something went wrong, then the patient would be totally deaf.

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That's what doctors have been telling me too. I only have one good ear and they don't want to take any chances. But my good ear isn't really good. :((

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ksdm | @ksdm | Mar 13 9:24am

I would see someone other than a surgeon. Surgeons want to operate and maybe there is an alternative.

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