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Old 01-02-2006, 11:04 AM   #1
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Patulous Eustachian Tube Surgery Experiences ?

Hi all,

is there anyone out there who had effective cartilage graft insertion, to treat Patulous Eustachian Tube ?
I heard only from two people who had this surgery. In both terms their symptoms where gone first, but gradually came back.
I have problems with pressure changes, crackling and popping sounds in my ears.
Maybe there is someone out there who can tell me something about his experiences ...

Thanks,
mazomatic

 
Old 03-17-2006, 06:56 PM   #2
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hello mazomatic,
I am also considering having the cartilage graft surgery for PET with dr. Poe.
From what I know, it does in some cases (probably quite a few) come back after a while, but what dr. Poe told me was this....the cartilage graft leaves some scar tissue behind and for people who's symptoms come back he does an injection with some kind of calcium substance which then closes it up again (not so much that it becomes totally blocked - all going well), the reason the injection works after the cartilage graft and not before it is because if you have the injection before, it eventually gets absorbed by the body and is therefore not an effective way to correct the PET, if you have the injection after the cartilage graft it "holds better" to the scar tissue left behind from the cartilage graft. I have tried to repeat it exactly the way he told me. Apparently he has had success with that. I hope that helps.

 
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Old 03-31-2006, 04:30 AM   #3
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hi aja,

thanks for your info.
If Dr.Poe said itīs only a few people whose symptoms came back, then the surgery seems to be a good option.
I think the matter why I only heard of people who still have problems after the surgery, is that the guys who were treated donīt post messages on messageboards no more.
Did Dr.Poe say anything about a possible constant pressure feeling after the surgery ? I have no Autophony, so the pressure and crackling is what I want to get rid off. I think I read something like that on another message board a while ago, but maybe that was a special case.

Thanks a lot,
mazomatic

 
Old 03-31-2006, 05:30 AM   #4
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Re: Patulous Eustachian Tube Surgery Experiences ?

Quote:
Originally Posted by mazomatic_r
Hi aja,

thanks for your info.
If Dr.Poe said itīs only a few people whose symptoms came back, then the surgery seems to be a good option.
I think the matter why I only heard of people who still have problems after the surgery, is that the guys who were treated donīt post messages on messageboards no more.
Did Dr.Poe say anything about a possible constant pressure feeling after the surgery ? I have no Autophony, so the pressure and crackling is what I want to get rid off. I think I read something like that on another message board a while ago, but maybe that was a special case.

Thanks a lot,
mazomatic
with no autophony..... explore myoclonus,the cracking and pressure is a symptom of this, so are many others you have listed.
lib

 
Old 03-31-2006, 01:25 PM   #5
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hi mazomatic, you're welcome.
listen, have you actually seen dr. poe yet? Autophony is one of the main symptoms of PET, if you don't hear your voice louder at all, then Lib is probably right, you probably have something else. Make sure you get a correct diagnosis.

 
Old 04-01-2006, 03:25 AM   #6
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hi aja, hi lib,

no I havenīt seen Dr.Poe yet, because Iīm living in Europe. But I heard so much good about him. Unfortunately I am very afraid about flying. So itīs not possible for me to get an appointment with him.
But I have a good PET-specialist here in Europe, too. He said autophony is one of the main symptoms, but not all patients have this. He had done the surgery a couple of times, and all his patients were satisfied.
I really think in my case itīs pet. Every doctor I had seen in the last 10 years, has diagnosed a patulous eustachian tube. I donīt think that I have myoklonus.
The problem is, that it seems to be impossible to make a 100%-diagnose in pet. I thought they can see it if they go in with an endoscope, but my doctor said, itīs hard to see if the e-tube is working correctly or not.
But my eardrums move, when I sniff, I can move them in and out. Furthermore I get crackling or pressure feeling often, when I swallow. And when exercising itīs getting worse, too.
Has Dr.Poe a save method to diagnose pet ? As what I read until now, there is none.

Regards,
mazomatic

 
Old 04-12-2006, 07:52 PM   #7
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Re: Patulous Eustachian Tube Surgery Experiences ?

The worst symptom of PET for me is hearing my own breathing. I had cartilage graft done one year ago. Unfortunately it did not work for me. I know couple of people that had it done as well but they also had to have done additional procedure such as calcium injection. Probably one single surgery does not cure PET. It seams there is no simple fix for it and usually requires more than one intervention. I have been using Patul-end drops since November/05. The drops are strong and the stinging is terrible but it closes the E-tube usually for 3 to 5 days for me.

 
Old 04-13-2006, 04:44 AM   #8
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Re: Patulous Eustachian Tube Surgery Experiences ?

mazomatic,
aja has p e t confirmed by poe, as she has written, autophoney and breathing sounds are the symptoms. your symptoms mirror mine as we have compared them on email. with p e t you do not get the symptoms we get from outside sounds. yes my eardrums moved all the time until i had the tendons severed....your symptoms are consistant with myoclonus, not p e t.
a good dr will be able to diagnose this, perhaps going back with a list of symptoms and asking if it could be myoclonus will get you the right diagnosis.
lib

 
Old 04-13-2006, 11:13 AM   #9
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hi gryzly, did you have the cartilage graft done with dr. poe? why did you not consider having the calcium injection afterwards? did the cartilage graft surgery make your PET any worse, or casue other problems? or did it just make no difference? thanks for the feedback.

 
Old 04-13-2006, 11:31 AM   #10
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Re: Patulous Eustachian Tube Surgery Experiences ?

gryzly, I also want to ask you..how long did it take for the symptoms to come back and are they just as bad as before?

 
Old 04-19-2006, 09:25 AM   #11
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Re: Patulous Eustachian Tube Surgery Experiences ?

Quote:
Originally Posted by gryzly
The worst symptom of PET for me is hearing my own breathing. I had cartilage graft done one year ago. Unfortunately it did not work for me. I know couple of people that had it done as well but they also had to have done additional procedure such as calcium injection. Probably one single surgery does not cure PET. It seams there is no simple fix for it and usually requires more than one intervention. I have been using Patul-end drops since November/05. The drops are strong and the stinging is terrible but it closes the E-tube usually for 3 to 5 days for me.
I have had the autophony on and off for the past four years and is very, very annoying to say the least. That was when I was in college too... talk about having a hard time trying to give a presentation. Anyways, thanks for informing me about Patul-end. I just ordered some off of their website and can not wait to try it. Do you drip it into the ear, or is it a nasal spray? I also read that these trials are in Phase III and are within a year being approved. Great news for everyone with PET!

 
Old 04-19-2006, 07:31 PM   #12
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hi Aja and Ty Hayes
Sorry Aja but I could not reply to you earlier. It was very busy holiday time for me. Yes, the surgery was done by Dr. Poe. I did not see any improvement afterwards. The full autophony (hearing own breathing, own voice and terrible pressure) came back about 1 week after surgery. I did see my own ENT 6 months after the surgery and I requested Ventilating Tube again which helps with releasing pressure but it does not eliminate autophony. Anyway I have not gone for calcium crystal injection yet because I would have to pay for it by myself and it is not cheap. I may go in the future though. There are not guarantees that it will work neither. Everybody is different. I know one person that had cartilage graft which helped her in about 30-40% and then after 1 year she had calcium injection done. Now she says that she feels almost cured. Anyway as I mentioned in my previous posting I started using Patul end drops and they help the most. I administer it in a sitting position with chin up, head tilt to the right (my right ear is patulous). The instruction is attached when you receive them. I put only one to two drops through the right nostril. I ordered the drops (15ml) in November and still have it. If the drops are administered correctly you will feel terrible stinging in the e-tube. It is worth to suffer as the tube closes immediately (for me it stays closed for 3 or even 5 days). I can function normally during that time. When I start feeling fullness and pressure in my ear it means that the tube will open up again so I use the drops again. Anyway the drops help me to live almost normal life again although it is only temporary fix. I hope you can also benefit from the drops. Any relieve from the autophony is worth to try. Good luck.

 
Old 04-20-2006, 09:51 AM   #13
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Re: Patulous Eustachian Tube Surgery Experiences ?

Thanks for the quick response! You mentioned that you feel pressure in your ear; I have never felt any pressure, I just start to hear my own breathing and my own voice when I talk. The weird thing is that it goes away some days, and then comes back.

Anyway, I did order the Patul-end drops and am waiting for it in the mail. I can't wait.

Do you know when the prescription should come out? I heard that the Patul-end drops are from an early stage of testing and that after the FDA approves it, then next year sometime you can get the final product by prescription. Does this sound familiar?

 
Old 04-20-2006, 11:44 AM   #14
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Re: Patulous Eustachian Tube Surgery Experiences ?

thanks gryzly, i appreciate the response.
I've had the patul-end drops for about a year and I do use them on special occasions. I find them very unpleasant to use (they give me a headache and make me feel generally not very good, and they only last a few hours for me, but they come in very handy for emergencies, like an interview or special socail event).
thanks again for the feedbak on the surgery, I think you're right in saying that it varies greatly, just like people's reaction to the drops varies greatly. i've spoken to a couple of people who said the surgery improved their symptoms tramendously.
we'll see.
Ty_Hayes, you put the drops in your nose lying down (or with head tilted as gryzly does) and sniff. it takes a while to get the hang of administering it right. i'm sure it will give you some relief though.

 
Old 04-22-2006, 04:09 AM   #15
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Re: Patulous Eustachian Tube Surgery Experiences ?

Hello Everyone,
I was considering getting surgery done from Dr.Poe, but after hearing so many mixed responses I am thinking of dropping the idea. It's a lot of money for just "Giving it a shot".
So I am thinking of getting Teflon Ventilation Tubes inserted in my ear drums. I have heard that even these don't work as some people have tried it. But I think it will help release the pressure. ALthough it will not help with the autophony. But at least it will solve 1 out of 2 problems. I think dealing with the pressure is much worse than dealing with the autophony.
Have any of you tried putting these tubes in? What do you have to say about this? Its a risk free surgery and the ear drum heals itself in 99.9% cases. I don't see any other option except getting it done.
PLease post your views.
THanks
Kunal

 
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