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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
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
[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?
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





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