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Hearing Disorders Message Board


Hearing Disorders Board Index


Dear Remmy,

I'm so glad you do not have autophony. Do your ears have a stuffed up feeling or a feeling of them needing to pop like you are in an airplane? Mine do, but not as bad as they did before my surgeries with Dr. Poe.

Your case sounds like mine did before I got the autophony - popping every once in a while and a couple of times a slight episode of autophony. My Eustachian tubes quickly closed and never opened again until I got the ventilation tubes, which changed everything.

You asked what I would do in your case. My opinion, considering everything I have gone through, would be to not do anything at this time. Maybe time will heal what is happening in your ears. Dr. Poe says that sometimes the PET will heal on its own. Since you don't have autophony, don't touch what isn't broken yet.

If I hadn't had the vent tubes placed in my eardrums for earaches, I might not have autophony. After a really bad cold, my ears felt stuffed and that is when they started buzzing (tinnitus), but I didn't have autophony.

My 31 year old daughter has the same kind of popping that you do along with hearing sensitivity, but just in that ear. If she were to ask me what she would do, I would tell her the same thing I am telling you - do nothing at this point. But like you have said in the past, we are not doctors. Oh, I would tell my daughter not to lose any weight. She is as thin as a stick.

Dr. Poe just tries to get rid of the autophony through his procedures and I'm sure that is what Dr. Shea does, too.

I will tell you some advice that Dr. Poe told to me for everyone to follow especially those with PET. And in your case, with you being borderline, I would do what he says.

He says not to blow your nose hard, just a gentle blow.
Don't sniff too hard.
And never stiffle a sneeze. You just have to let it rip.

Doing those things are really bad on ears.

Do what you can to avoid a cold. Dr. Poe says that at the first sign of a cold do the following to stop it or lessen the severity:

Hot liquids of 140 degrees
High doses of vitamin C
Zicam

Zicam is offered at grocery store pharmacy areas here in the USA. It comes two ways - nose gel or a mouth spray. There has been reports of people losing their sense of smell after using Zicam in the nose, so I would advise to use the mouth spray. It's very simple and doesn't taste bad. Maybe if you can't find it in your country, you can order it off the internet.

Last June, I was going to Boston for my first surgery, but going there from London. I had a bad sore throat at the time and called Dr. Poe when I got to Boston three days before my long awaited surgery. He advise me what I just told you about warding off a cold. By the surgery day, my sore throat was totally gone with no more symptoms.

About what Nik told us about what they are doing in Japan, you called it ligation. They do that here in the USA, too. I live in a city with a prominent medical school. I have been to the top ENT professor at that school regarding my PET. He is the one who recommended me to Dr. Poe.

Ligation is what they do at the medical school here to fix untreatable PET. Only here they call it "obliteration". That is what Dr. Poe calls it, too. Look that up on the internet. When that option was presented to me by the doctor at the medical school, I knew it was not something for me. I don't have it bad enough in both ears to go that far. Obliteration is very drastic. It's not reversible and you have to have vent tubes your whole life. You can never wash your hair the same way, nor ever go swimming, etc.

My regular ENT said that if a doctor told me I should have that, I should run the other way. But people who have it sooo bad, it's good there is an option.

There is an ENT in California who I talked to before going to Dr. Poe. He tries to fix PET with gelfoam. It is inserted like Dr. Poe's method, but it only lasts between 2 to 3 months before it dissolves. I don't know what they do at the Ear Clinic in Los Angeles, California. I should call.

I still think that Dr. Poe or Dr. Shea are the ones who fix PET in a more natural way, to have the Eustachian tube function normally.

I'm still waiting for replies from both Dr. Poe and Dr. Shea before I decide to postpone my surgery with Dr. Poe in June. Remmy, are you the one who said you have a friend who is having surgery by Dr. Shea soon? I will be waiting to see how that goes.

Have you talked to Dr. Poe or Shea about what you should do when you don't have autophony?

Cathy
Hi Remmy and other PET friends,

Remmy, you asked me if my PET is accompanied by tinnitus, and yes, it is. It started with the bad head cold that got everything started. I already had it when the autophony started. The tinnitus is more of a roaring sound, like a I'm holding a seashell to my ears. But sometimes it is a high screeching sound, but that doesn't last very long.

Thank you for the advice about my daughter and that she should avoid losing any weight. I have been worried about her weight since she told me about her ear popping and crackling. But she is very athletic so burns any fat she has by biking, swimming and running. She is all muscle.

Also, she is newly pregnant, so maybe will gain some weight with that. I know that pregnancy can bring PET on, and then it can go away with delivery. I am not saying anything to her about a possibility of getting PET while pregnant. I am just hoping she doesn't get it. I don't want to scare her.

About her getting tested for RA, I'm don't know how to mention it without scaring her. She is already scared with being pregnant.

I get tested for RA every once in a while, but so far, it's been negative.

I am not finished with trying to get this ear monster fixed, but I am wondering if all the PET symptoms go away completely, ever. Why do we have tinnitus? If we get the PET fixed, does the tinnitus go away? I am thinking not because when we lie down, our Eustachian tubes shut, and the PET symptoms goes away. If the tinnitus is caused by the PET, wouldn't that go away, too, when we lie down?

Anyway, I run a fan at night while I sleep. That does a good job at masking the sounds in my ears.

I'm still waiting to hear from Dr. Poe and from Dr. Shea. They must be busy this week. My June surgery date is coming up fast with Dr. Poe.

Dr. Poe never mentioned the exercises you asked me about. I have read about them. I have jaw trouble, too, so I would be afraid the exercises would kick the pain into motion that I suffer with the bad jaw. Dr. Poe thinks my bad jaw is from my PET and that they are feeding each other. The pain in my jaw has settled down, along with my PET, though, at least for now. Strange.

Good-bye for now,

Cathy
[QUOTE=NMP79;2970516]Dear Cathy,

Thank you for the info.
P.E.T is such a strange disorder, what works for one person does not work on another??????
If I may ask, the silicone plug is instead of the cartliage graft?
It must be a one off surgery if it works? The silicone plug will not get absorbed by the body since it is a solid material and not liquid?
This must be Dr Poes new invention for treating P.E.T, it sounds promising.
Although it did not work for you, did Dr Poe tell you why it did not work for you?
About your worries for the over correction for your new surgery, - I have read great things about Dr Poe and you are in good hands, I am sure all will be fine. Good Luck.

Your p.e.t friend from the Netherlands asked me to enquire about you, she sends her regards:)

Take care.

Nik[/QUOTE]

Hi Nik,

Yes, the silicon plug was used instead of the cartilage graft and you are exactly right when you said it is a solid material and will never be absorbed, like a cartilage graft could be. That is why Dr. Poe wanted to try it. I imagine it to be like a hard plastic, but maybe it's semi-soft. I don't know. It was weird when I saw it when Dr. Poe did a scope when I went back there last September for the cartilage graft in the same ear because the silicon plug hadn't worked. I could see that my E tube was extremely wide and there at the bottom was a giant, or so it seemed, bulge, which was the silicon plug. It reminded me of a very pregnant woman ready to give birth at any moment. It really stuck out into the E tube. I tell people I might be one of the few women with only one silicon implant. But that will change in June when I will get another one to pair up with the first one. It's funny to think of how that will look in a scope.

I think the silicon plug has been used in Japan before Dr. Poe used it, but I'm not sure.

Dr. Poe doesn't not know why the silicon plug did not work for me, and is really baffled as to why the cartilage graft didn't work. He tells me that everytime I speak with him. I guess I am just difficult to treat.

Please tell your Netherlands friend hello for me and that I care.

You mentioned I am brave to take the risk. I agree that success can only be found with taking a chance. But I am scarred. I don't know if it's because I have already had two different surgeries on the same problem with just a slight improvement, or if Heavenly Father is telling me not to have it done.

How do I know? I am afraid of ending up worse. I know I am an experiment. That doesn't sound very good, but I guess someone has to be the one.

The autophony in the twice surgical ear is worse in the morning, every morning. It used to be all day long. I hate it, but I wonder if it's worth having done. It will be if I get cured.

I am wondering, Nik, if you had a hearing loss when your PET started, and if some or all of that loss has been restored with the silicon tubing placed. Maybe it's too soon to tell. And did you have tinnitus before and now you don't?

I remember you mentioning in one of your posts that you have packing in your ears. I was shocked to read that. Why did Dr. Shea have to do that? I assume it will eventually dissolved. You might hear some popping and crackling as it does so, but don't think your PET is returning.

I really don't want packing in the ear that Dr. Poe is going to place the silicon tubing. Maybe he'll do it differently.

I'm sorry for the long post. Let me know about your hearing. Maybe as your ear gets less swollen from your surgery, your ear infection will clear up.

Cathy
Dear Cathy,

Thank you for saying hi to Dr. Poe for me. You can also refer to me as: "the Dutch patient with the fever on the surgery day". Dr. Poe will also recognize that.

Actually, what I mean by a severe case of PET is a wide opening in the ET that cannot be compensated by sniffing. That causes autophony all the time. I was lucky I did not have that. Maybe that is also the reason Dr. Poe didn't offer me the option for the silicon plug.

The silicon plug sounds to me like a radical solution. Or am I wrong about this Cathy? Have you seen the plug before Dr. Poe inserted it into your ET? Have you seen pictures of it before you saw it with the scope?

Cathy, before I had the injections I did NOT have any stuffed ears or any earaches. I have a slight Tinnitus in my right ear for already 18 years, but that was not caused by the PET. I assume that was caused by a hard sound.
I had twice a cholesteatoma in my right ear and that caused a lot of damage.

Many years ago I had a few times serious ear infections, caused by seawater entering my middle ear. I was completely deaf at that time in my right ear and had a lot of pain in my right side of the face and jaw. It was a middle ear and outer ear infection. Eventually it cured by use of antibiotics.

The last 10-15 years my ears are very stable, dry and no infections. However the problem with the cholesteatoma in my right ear was causing so much problems. My ears didn't feel like, but they DID pop many, many, many times. I believe all that popping and sniffing I did caused a pocket to develop in the eardrum and the cholesteatoma to grow and damaged my right ear.

Normally, if the silicon plug works as it has to work, then your ET will close and only opens now an then after a swallow or yawn. Then your ET should not be popping anymore, or feel like it has to pop. Then you also don't have any autophony.

Cathy, when I exercise I have no problems in my left ear. That ear is completely cured. My right ear can still pop, but the autophony is actually not worrying. I have some full feeling in my ear then and I still can compensate by sniffing. However that feeling is not pleasant but still I exercise and like to run long distances. I hate to see my self swell when I lay down all day and do nothing.

In januari this year I was 85 kg (187 pounds). Now I am 76 kg (167 pounds) by 182 cm. That also makes me feel a lot better ;)

Addio
Hi Nik,

You asked me if I have had any relief from autophony from my previous surgeries. I have had only five days of relief from the autophony and that was last June when I had the silicon plug put in my left ear. I thought the plug had worked and then I heard a very loud boom in that ear, and the autophony came back. The five days without it was nice, though. That is the only relief I have had since this whole thing has started.

Dr. Poe will put in another plug in June to go with the one that is already there. So my left ear will have two silicon plugs in it and the right one, the calcium injected ear will have the Shea silicon tubing, if we decide on that for sure.

Dr. Poe called on Saturday. We were out of town again, and my husband's cell phone wasn't working at the time. Dr. Poe did leave a message saying that he had received the silicon tubing from Dr. Shea and it looks promising. He said he would call again to discuss it. I was upset that the cell phone server was down that day and that is why Dr. Poe's call didn't get to us. I am anxious to talk to him and make sure I am still going in June.

Nik, I was thinking that the packing in your ears was on the inside, behind your eardrums, which I didn't want. But I am assuming it's next to your eardrum on the outside, which makes me feel much better about having the packing done to me. I'm hoping Dr. Poe won't use it, but I'll bet he will if Dr. Shea used it on you.

Yes, I have had it before when I had the vent tubes removed when they were giving me so much trouble. I had packing which was called gel foam placed against my ear drum. Unlike you, where you get to go to your doc and have it removed, my doc wanted it to dissolve on it's own. I spent three months hearing the gel foam moving against my eardrum and could hear it crackling and popping as it broke down. I couldn't wash my hair as normal, because of the foam. Finally another ENT removed what was left.

So that is why I don't want the foam, but I feel better after you said you were going to have it removed. At least it's not on the inside and can easily be removed.

I'm very happy that your right ear gets better with each new day. I am confident that your left ear will clear up. I wonder what happened to make you have that infection.

You also asked about the calcuim injection. You are right that it produces new tissue, which is scar tissue, over time. Dr. Poe said up to a year it will produce it. I don't know how many injections Dr. Poe will do. I have had one in my right ear, not the silicon plug ear, but the ear that used to not be so bad. In spite of the injection, that ear is getting worse. I have not received any improvement in that ear because of the injection. The only change is it is getting worse with autophony.

I'll let you know when I talk to Dr. Poe about he silicon tubing. If you had not have had the infection, you would be home free, but that will come. Would you have it done again, if you had to?

Cathy
Hello Nik, Addio, and Cathy,

I have been following your posts closely for some time now, and finally found out how to join you. As you can guess, I have PET too, quite severe, on both sides, with autophony in the left e.tube all day long. The right one is always popping - 'poppy' - but on the verge of becoming completely patent as well. The feeling that, after six years, it is still progressing makes me sad and quite desperate at times. That I don't have to explain to you.
Since reading about dr. Poe, and later about dr. Shea, I am considering to have surgery for my PET, and have a normal life again. But like all of you I am very scared of the operation itself too: that it might not help or create other problems. Being cured seems to be a long way of trial and error, especially for the 'bad cases', that it is the only certainty we have. That is why, in my eyes, the three of you, having taken such big steps, are very brave. And it is really great too that you are willing to share your hopes and fears and experiences with your fellow sufferers. That is the first thing I wanted to express.
But how encouraging your stories may be, reading them makes it even more difficult to decide what to do. It is such a complex matter... Dr. Poe seems to be the one who is most experienced and advanced in PET, trying to reconstruct the e.tube and have it function like it should, with different approaches. But it seems risky too (that is why he is so careful), and is very expensive: I wouldn't be able to go forth and back, if needed (in case of undercorrection, or like Addio may have to). Dr. Shea's treatment (getting rid of the symptoms (autophony), which would suit me just fine...) seems simpler and is a lot cheaper. But like Cathy, I am afraid of having my eardrums cut, of the packing in my ears for weeks, the possible fluid build-up, the vent tubes... It is bad enough in my ears and head as it is.
That is why Cathy's last message made my heart jump: having Shea's silicon tubing, not through the eardrum but through the throat, sounds like having the best of both procedures. No cutting in the e.t.tissue (because this 'plug' is supposed to be inserted in the 'open space' of the tube, which should make it reversible as well), and no cutting of the eardrums either! I am curious what the others think about that.
It also raises some questions, which you probably won't be able to answer before your surgery, Cathy. I always understood Shea's plug is supposed to get 'stuck' in the narow part of the e.t.tube (maybe Nik can tell more about that?), and that the best way for that is to insert it through the eardrum. In your throat, the opening of the e.tube is widest, how could it possible get stuck in there? Wouldn't it just fall out? Do you think dr. Poe inserts it all the way into the e.tube, up to the narrow end, but only from the other side? Cathy, maybe you are tired of all the PET stuff for now, and just want to have the surgery done, and then get back to us. I would understand that very well. But I hope you'll write some more before you go over.
(I would really appreciate any answer from all of you.)
Take good care,
your PET-companion Lucie
Hi Cathy,

You says, now, both ears feel pretty good. But how pretty good?
Do you still have popping in your ears? Or all symptoms completely disappeared?
And as i understand, both ear were treated differently? Do you notice any difference from one ear to the other? In term of popping or another?

About the cartilage he used, i wanted to ask: does human body create again cartilage where it was taken or now will you, all you life, have cartilage missing in your nose?

About the sore throat, is it just when you swallow or even with not swallowing, you throat hurts you?

Thank you.
Hi Everyone,

I finally have some time to write to all of you and answer questions.

Addio,

My "leaking air" ear has now disappeared, which tells me that the holes in my eardrums are probably closed up. I am still being careful not to get water in my ears, probably until I see my ENT here in six weeks.

My husband really had a great time running around the Charles River and we both enjoyed watching the sail boats. You went at a very cold time, so couldn't enjoy it as much. But this was the first time we have been to Boston when it was warm. I was thinking it was never warm in Boston.

Dear RealforReal,

I wasn't clear when I said my ears felt pretty good, so I will be more specific for you. I had two episodes of autophony last week, both times a few days after surgery, but none since last Thursday. It was in the ear that has had the most work done on it - cartilage graft, silicon plug and now the recent cartilage bridge. I had some clicking in that ear when I swallowed last Saturday night. It has since gone. I had some popping a day after the surgery, but none since.

Both ears feel almost the same, except for the right ear, the one with the Shea silicon tubing. I don't feel like there is anything stuck in there, but once in a while it feels like I'm going to get autophony at any moment, but don't. Since the surgery a week ago today, I have not had any autophony or popping in that ear.

The left ear, the worse one, feels normal like it used to before PET struck me, but then sometimes it feels a bit plugged that lasts for a few seconds, but nothing like it did before the surgery. I feel no difference in my ears when I lie down or am standing up. Before the surgery, there was a very big difference. Lying down, my ears always felt normal, standing up I always had autophony in the worse ear and always a plugged feeling in both. That is gone, at least for now.

Dr. Poe does not like to use the same surgerical procedure on both ears at the same time in case something goes wrong with both ears. Doing a different procedure on each ear lessens the chance of both ear going wrong.

From what I understand, cartilage does not regenerate itself. The cartilage taken from my ear last September has not grown back. But you can't tell anything was taken from it. I can, though, but it's okay. That ear just feels a little soft if I pressed down in the opening. Like I stated in an earlier post, Dr. Poe took cartilage from my nose, along the septum, which is on the inside of the inside of the nose. Does that make sense? But I think it's way up there. It did not hurt like the cartilage taken from my ear, unless I pressed on my nose, which I didn't do after the first time. So really there was no pain in my nose, unless I created it. I will never miss the cartilage. If that bridge holds, for a year or longer, and I need to have it done again, I will ask that the cartilage comes from my nose. I will never miss it, no pain, but if my nose started dropping down to my mouth because cartilage is missing, it'll be worth it. I might look like a duck, but I won't have autophony.

And your last question was about the sore throat. It hurts for the first three days constantly. It was the reason for the pain meds they gave me. There was no other pain that required any pain meds. The sore throat is caused by the instruments used and the hands. Dr. Poe has small hands, which is good for this kind of surgery.

Swallowing was the time it hurt the worse, but after the pain meds start working and you keep drinking cold water and vanilla milk shakes, it gets better. It's much better than having the ear drums cut and peeled back. I'll take that sore throat any day.

Please ask any more questions, and I will try and answer more quickly than I did this time. Cathy

Hello Lucie,

In answer to your question about how the silicon tubing stays in place, I don't know. Nik would probably know more than me. I wanted to ask Dr. Poe if I could see the actual tubing but forgot. I don't know Dr. Poe's expectations about the tubing, but I know he wanted to give it a try. And so far, so good.

Getting the vent tubes out really hurt this time. The last time in September, they didn't hurt at all, just the sucking noise like a toilet being plunged. I got some autophony in the one ear right after the tubes were taken out, so maybe it was in protest to have that trauma. I really think the holes from the vent tubes are closed now. In spite of the pain of getting them out, I would have them again versus taking the train home.

Take care of yourself, too, Lucie,

Cathy

Hi Remmy,

I am so happy being autophony free, at least for now. I am still paranoid and it's still way too early to call me permantely fixed. But I am enjoying life so much more and enjoying taking it easy for another week. Dr. Poe says to do so for 14 days after surgery. It was 10 days on my other surgeries, and I don't know why it is for more days, but that is okay.

I agree that the doctors who are trying to help people with PET are gifts from God. I told Dr. Poe that he is an angel among us. I also told him that he needs to go to Europe to fix all of you, but he just smiled. He travels a lot teaching other doctors who are interested in learning how to fix us. Let's hope that more doctors everywhere will attend his lectures and learn.

Thanks for writing to me, everyone. I will keep you posted on any changes, or just positive updates, which I hope are the only ones I write.

Cathy
Dear Lucie,

I enjoyed reading your post, as I always do. You are very funny.

I think Dr. Poe would be happy to look at your MRI and CAT scan results. You could even have a consult over the phone and then decide if you want to see him in Boston.

My latest report on my ears is this: The left one has had about four episodes of a few seconds worth of autophony since the surgery, and a lot of crackling and soft popping. It's the one that has had the most work done on it with the latest being the cartilage bridge. The right one, with the Shea tubing has been silent, no popping, crackling or clicking, until this morning when it let out a big crackling and then autophony. I quickly bent over and the ET shut just as quickly, with no other autophony since. That was about six hours ago.

Both ears are reminding me that it still isn't a for sure fix, and it could be months before I'm comfortable. I have lost my appetite worrying about it.

But I am enjoying an autophony free life and love each day. I realize that could change at any moment, but am happy so far. If I get autophony once in a while for just a second, I will consider myself lucky and satisfied.

I know that for the next week or two, the swelling will continue to decrease, so I will see what happens.

For my PET friends, who I have written on the HB before, that my daughter is pregnant with our first grandchild, we found out yesterday that the baby is a girl.

Maybe PET free, and a granddaughter on the way is pure happiness.

Bye for now Lucie. Let us know if you contact Dr. Poe.

Cathy
[QUOTE=fluffyshouse;2906194]Hi Remmy and other PET friends,

Remmy, you asked me if my PET is accompanied by tinnitus, and yes, it is. It started with the bad head cold that got everything started. I already had it when the autophony started. The tinnitus is more of a roaring sound, like a I'm holding a seashell to my ears. But sometimes it is a high screeching sound, but that doesn't last very long.

Thank you for the advice about my daughter and that she should avoid losing any weight. I have been worried about her weight since she told me about her ear popping and crackling. But she is very athletic so burns any fat she has by biking, swimming and running. She is all muscle.

Also, she is newly pregnant, so maybe will gain some weight with that. I know that pregnancy can bring PET on, and then it can go away with delivery. I am not saying anything to her about a possibility of getting PET while pregnant. I am just hoping she doesn't get it. I don't want to scare her.

About her getting tested for RA, I'm don't know how to mention it without scaring her. She is already scared with being pregnant.

I get tested for RA every once in a while, but so far, it's been negative.

I am not finished with trying to get this ear monster fixed, but I am wondering if all the PET symptoms go away completely, ever. Why do we have tinnitus? If we get the PET fixed, does the tinnitus go away? I am thinking not because when we lie down, our Eustachian tubes shut, and the PET symptoms goes away. If the tinnitus is caused by the PET, wouldn't that go away, too, when we lie down?

Anyway, I run a fan at night while I sleep. That does a good job at masking the sounds in my ears.

I'm still waiting to hear from Dr. Poe and from Dr. Shea. They must be busy this week. My June surgery date is coming up fast with Dr. Poe.

Dr. Poe never mentioned the exercises you asked me about. I have read about them. I have jaw trouble, too, so I would be afraid the exercises would kick the pain into motion that I suffer with the bad jaw. Dr. Poe thinks my bad jaw is from my PET and that they are feeding each other. The pain in my jaw has settled down, along with my PET, though, at least for now. Strange.

Good-bye for now,

Cathy[/QUOTE]
What are these excersises you speak of?
Dear Petear,

You quoted a post I wrote quite awhile ago about some exercises for the ears. I don't remember the exercises but recall that someone here on the HB asked me about them. Go back a few more posts and see if you can find who asked me about them.

Dear RealforReal,

I am doing well. It's been four weeks since my surgery with Dr. Poe. I can tell the swelling is going down. I have been getting a few moments of autophony in both ears, but especially in the ear with the new cartilage bridge. I have a lot of popping in both ears, especially in the cartilage bridge one. Sometimes it's like fireworks going off. Dr. Poe says it is because of the negative pressure, meaning that my ears are over-corrected, which is better than autophony. When the swelling goes down, the negative pressure will hopefully go, too.

Negative pressure means that my ears feel a strong need to pop like on an airplane. Hopefully, that will go away soon. Both ears are equilizing every once in awhile, so maybe I won't get a fluid build up.

I am happy so far with the surgery results, but am very cautious, knowing everything may break loose and the autophony will come back. It is wonderful not having it all day, every day. I won't feel comfortable saying I am fixed for a long time.

Real, how are you doing?

Cathy
Hi all,

Cathy, i'm doing "fine". My right ear is still noisy and my left who, before, was ok is now getting worse (it depends of the day). Left tube open the morning and after in the afternoon, it stops. But still, i can feel my left tube easy and ready to open. And all day long it pops when i swallow.
I'm waiting for make my CT scan, but as it is busy, i have to wait one month.
I noticed too that, in both ears, i feel something like between a very small pain and pressure. I don't know exactly. But it does annoy me. So I will see another doctor just for check if i am not sick or something else.

Cathy, about your ear treated with teflon tube, do you have all day long popping when you swallow? And did Dr. Poe told you it will (or should) disappear after a while?

And just about the teflon tube method not the cartilage bridge, what are the things you can't do (and during all long time) after getting them? (Especially when you get them inserted from the mouth and having no vent tube after).
Thank you.
Hello RealforReal,

It was good to hear from you. Your left E tube sounds like mine did before this last surgery. It would open up as soon as I got up in the morning and didn't close until late afternoon, and then in the late evening. That is the ear that I have had the most surgeries on. It's been six weeks since my last surgery with Dr. Poe and so far that ear is about 85% to 90% better. It took three surgeries to get to this point. But Dr. Poe built this last surgery on the other two, so those two surgeries were not for nothing. I figure they were just the base. I am still paranoid and things might still fall apart, but so far I am happy with the results in that ear.

The right ear that, like yours, was just noisy, until it got worse. It is the one with the silicon tubing in it that was placed six weeks ago. For the past week, it has been getting much worse. I was getting the popping and crackling, but Dr. Poe said that was from the negative pressure. I don't have the negative pressure anymore in either ear now because the swelling is going down. But I still have popping in both ears. The left one, the one that has had all the surgeries and is doing better, gets the most popping. Before this last surgery, the popping usually meant autophony for the next seven hours. But that ear is not getting autophony with the popping. Dr. Poe has only said the popping is from negative pressure, and I haven't asked him what else could cause it.

It is annoying but not as annoying as autophony. I will take popping forever before autophony any day.

You asked about the things I can't do with the silicon tubing after getting it. Basically, I can do anything. I am still taking it easy and will for two more weeks, when it has been eight weeks since the surgery. The swelling is going down, I think, and so the next two weeks are critical for me to see what I will end up with in both ears.

At first I could feel the tubing in my ear, but I can't now. It might have even been the swelling I could feel, but now I feel nothing. I think I might have to have more surgery on that ear because the tubing has not prevented autophony. Some days I get no autophony in that ear, but two days ago I had it for six hours, the longest ever. The Shea tubing is supposed to fix PET forever.

I had a vent tube in both ears after the surgery six weeks ago, but had them removed three days later. They were placed so that I could fly home.

I also had a lot of pressure before this last surgery all day long, but now it has mostly subsided. I also have bouts of pain and earaches. I have had the earaches since PET started for me. Dr. Poe said the earaches are not part of PET, and are probably caused from my jaw responding to the PET.

I hope I answered your questions. Please write again if you have any others. And keep us up to date on how you are doing.

Cathy
Hello Real for Real,

I'm sorry I haven't answered your post sooner. But our other PET friends have tried to answer your question regarding whether or not the symptoms come back exactly like they were before the Shea silicon tubing was placed. All I can say is that I hope, at the very least, the symptoms are the same and not worse. I truly don't know. I plan on asking Dr. Poe when I call him in a couple of weeks. He may not know because I'm the first one he has placed the Shea tubing in.

You asked about my right ear with the Shea tubing getting worse. This week the autophony is much better in that ear than when I wrote it was getting worse, in a previous post. I hate to report this but as of Monday of this week, my left ear, the one with the most surgeries on, gave way and now I have the autophony back. It is not as constant as before but it may get that way. That is why I am waiting a couple of weeks before I call Dr. Poe again. I am scheduled to go back for another surgery on October 1st.

So now both ears have autophony. The mornings are the worse. If I lay down for a few minutes, it will sometimes go away for a few hours.

I don't know until I talk to Dr. Poe what he will do with the Shea tubing or, with the left ear. He may have run out of options with that ear.

I had six wonderful autophony free weeks in one ear and seven in the other. I actually had a normal life and was thinking about the future. That is not the case now. I am not in a melt down mode but am staying positive.

I start back to work in two months, so hope things are better.

You asked about the popping that I had mentioned in another post. The popping has stopped in the Shea tubing ear, and it has decreased in the left ear since the autophony started. It was like something was trying to break free.

Remmy or Addio, do you have any idea why I was having so much popping and booming in my left ear before it gave way and left autophony?

I am going to check out the idea that Petear gave in a post on this HB on this thread a few pages back that PET might be caused by a fungus. She said she is taking a pill for that. She gave the thread lead in case any of you want to look back. She talks more about it.

Petear, are you still taking the pill and are you still autophony free?

Remmy and Addio, do the two of you know all the negative things about obliteration? I can't hardly think of it, but I want to know everything. If I ever want to be totally autophony free in my left ear, that might be the only way. I just have to figure out if I would rather have autophony or obliteration with the hated vent tube.

I had an ENT once tell me if obliteration is the only option told to me, to run the other way.

Bye my friends for now,

Cathy





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