Patulous eustachian tube disorder part 3.

Patulous eustachian tube disorder part 3.

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Discussion

TheAngryDog

Original Poster:

9,446 posts

157 months

Wednesday 30th May 2018
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I haven't posted here for a while as my PET has been pretty much non existent. That has changed in the last week. I used to get bad symptoms in my left ear (eustachian tube wide open) so I had bioplastique injected into it. My right ear wasn't that bad so didn't have any injected into that one. Last Thursday the eustachian tube in my right ear went wide open. It didn't happen again until today. I already have an appointment, hopefully with the specialist for July, I just hope that either this doesn't happen again or it happens on the day I see the specialist so that we can decide a plan of action. I really do not fancy another operation but I also do not fancy having to go through this in its current guise. Just needed to get that off my chest.

My biggest concerns are that it goes wrong and leaves me in a position I was in after my last injection which made me really sensitive to low frequency sounds, or that means I have an issue with my right ear feeling blocked and meaning I still have autophony.

It's quite upsetting tbh.

TheAngryDog

Original Poster:

9,446 posts

157 months

Sunday 17th June 2018
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Just had an interesting hour. The hearing in my left ear went robotic. My own voice also sounded robotic to me. Louder ringing in my left ear and also dulled hearing. Seems to be subsiding now but I have not experienced this for nearly 14 months so was a bit unexpected tbh. Anyone else had robotic hearing?

TheAngryDog

Original Poster:

9,446 posts

157 months

Thursday 21st June 2018
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Back to the eustachian tube being wide open. The most annoying part was that it happe6 earlier, I managed to close it by eating, and then 6 and a half hours later it reopened after eating. I did have an appointment to see the ENT specialist on the 26th of July but for some reason that has now been changed to the 17th of September. Not sure why and the hospital just told me to call my gp, which I tried but they didn't bother to answer the phone on the several times I tried to call throughout the day.

TheAngryDog

Original Poster:

9,446 posts

157 months

Friday 29th June 2018
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By some minor miracle, I have actually managed to get an appointment earlier than my original one! 12th of July, happy days. Hopefully have another operation later in the year and then see how the land lies.

TheAngryDog

Original Poster:

9,446 posts

157 months

Friday 29th June 2018
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TheAngryDog

Original Poster:

9,446 posts

157 months

Sunday 1st July 2018
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Over night it has become 24/7 Patulous. If you haven't suffered with this before or know someone who has then I can tell you it makes you pretty damn miserable.

TheAngryDog

Original Poster:

9,446 posts

157 months

Thursday 12th July 2018
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So that was a complete waste of time. My incompetent GP wrote to the wrong ENT, so when I got there I saw someone who has no experience with my condition.

He is going to write to the ENT that I usually see and ask him to make an appointment with me. Miserable doesn't even come close.

TheAngryDog

Original Poster:

9,446 posts

157 months

Wednesday 31st October 2018
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Saw the ENT today. I am on the list for an op. He could see my Ear moving very easily when breathing through my nose.

TheAngryDog

Original Poster:

9,446 posts

157 months

Tuesday 5th March
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Operation confirmed for April 3rd. Hopefully it won't end up like my last one.

abzmike

1,676 posts

54 months

Tuesday 5th March
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No one else seems to be responding, so good luck, hope it goes well!

TheAngryDog

Original Poster:

9,446 posts

157 months

Tuesday 5th March
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abzmike said:
No one else seems to be responding, so good luck, hope it goes well!
Cheers. Ah I don't mind, it's such an uncommon disorder that that most people will not have heard of it let alone know anyone who suffers from it. Proceedure is simple, just putting a big needle up through the roof of my mouth and injecting bioplastique into the eustachian tube to fatten it up. The body absorbs it over time so I'll need further top ups. The worst bit is that I could end up being hyper sensitive to noise again, but I think it is a a slim chance of that happening. I hope lol.

TheAngryDog

Original Poster:

9,446 posts

157 months

Wednesday 3rd April
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Game Day. Currently sat in the day surgery ward. Just seen the anaesthetist and the ENT specialist doing the surgery. Anxious but optimistic.

TheAngryDog

Original Poster:

9,446 posts

157 months

Wednesday 3rd April
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All done. Early days, let's hope it was successful

Isaac Hunt

10,617 posts

159 months

Friday 5th April
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TheAngryDog said:
All done. Early days, let's hope it was successful
How long until you will know?

juice

5,686 posts

230 months

Friday 5th April
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That needle into the mouth thing make my sphincter twitch (I don't like needles). Sounds bloody horrible, I hope it all works out for you !

TheAngryDog

Original Poster:

9,446 posts

157 months

Wednesday 10th April
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Isaac Hunt said:
TheAngryDog said:
All done. Early days, let's hope it was successful
How long until you will know?
Could be a while as I have a cold at the moment, and having a cold actually makes my condition better for a few weeks. The last time I had this done and it was successful I had a cold after so I am optimistic. I'll need further treatments over my life time as this isn't permanent, but if I can get 5 years out of it I'll be happy. I reckon I will know how it is going to be by the end of next week.

juice said:
That needle into the mouth thing make my sphincter twitch (I don't like needles). Sounds bloody horrible, I hope it all works out for you !
It's not the nicest. I think he went in where my tonsils used to be as that is where all the pain was this time.

Cheers, much appreciated!

TheAngryDog

Original Poster:

9,446 posts

157 months

Thursday 11th April
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In typical fashion, my left ear has started doing what my right ear was doing. Looks like I need another referral!

Isaac Hunt

10,617 posts

159 months

Thursday 11th April
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Sounds like an absolute nightmare.

Is there a Facebook self help group out there?

TheAngryDog

Original Poster:

9,446 posts

157 months

Thursday 11th April
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Isaac Hunt said:
Sounds like an absolute nightmare.

Is there a Facebook self help group out there?
It's not great, but I guess other people live with worse.

There is an FB group yes. Most members are from the USA. I try not to read it too much as I prefer to try not to let this get in the way of things.

TheAngryDog

Original Poster:

9,446 posts

157 months

Wednesday 24th April
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Well it doesn't look like it worked, so looks like I need a further top up. Joy.