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Hello Lotje,

I just had to write right back. I feel so bad that you have PET so bad. You just have to get some help. At least when I lie down, it all goes away. And I can push on a place in my neck, and that closes the Eustachian tube.

I just saw Nik's short note that he had surgery by Dr. Shea but I didn't get the post about his experience. Did you see it? I just want to know so much more about the Shea method and hear from anyone who has had it. I would like to know if you can have the procedure and not lose hearing.

Do you know or does someone else know how long they have been doing the silicon tubing and if it's past the study stage? The hearing loss scares me. The ventilation tubes I had placed in my eardrums a year and a half ago caused hearing loss, so I might be at a higher risk for that if they opened my eardrum up.

Dr. Shea has written me, but I had more questions so have written him back. I hope he doesn't mind all of my questions. He is located in Tennessee, which is in the southeastern part of the USA. I live in Utah which is in the western United States. The plane ride for me would be about three to four hours. I am hoping if they accept me as a patient that I could be evaluated and then in the same trip a few days later, have the procedure done, all in one trip.

You asked about the silicon tube that was placed in my ear. It is in the tissue leaning up against the Eustachian tube, and not in the Eustachian tube. On the other side of the same Eustachian tube is the cartilage graft that I had last September. That is also in the tissue. Dr. Poe was trying to narrow the Eustachian tube from the outside of it. In my other ear, which doesn't have the constant autophony, Dr. Poe injected it with the calcuim paste, just like he did for Addio. That ear is actually worse than before the injection, but it could be because I had ventilation tubes after in order to fly home, and not the injection itself.

We had taken the train last June, when I had the silicon plug inserted. We had to travel across the United States from Boston. It took 3 days and my husband was so miserable. The train was so rough and bumpy that I'm sure the train rolled over many rocks or at least it felt like it. I slept on the bottom bed, but my husband and son slept in top bunks. They had to be strapped into their beds so as to not fall out during the night. That is why I had the vent tubes for the second time so we didn't have to take the train. But if I have the surgery from Dr. Poe in June, we will take the train again. Not more tubes for me! Your trains in Europe are so nice and smooth. They are not like that here. I'm sure they are using the same trains as they did 100 years ago, except that they have a new outside shell to look modern.

You are right that the two methods are just the opposite. I am going to ask Dr. Poe about the Shea method.

Why are you afraid to travel with your PET? Flying won't bother your ears because they are too open and won't get clogged like a normal person's ears. Dr. Poe's appointments are very back up, so if you call to make an appointment, you could wait several months. And surgery is usually booked four to six months in advance. That will give you time to get the courage to come to the USA. You could make the appointment with Dr. Poe and the Shea Clinic at the same trip. Tennessee is a few states below Massachuetts where Dr. Poe is. It wouldn't take long to fly between the two states. Take someone with you then maybe you will be more confortable traveling. I wouldn't do it alone. It's too scary for me, too.

I also feel like the best of my life is over. I am 52 years old and thought a couple of years ago that I still had a long time before I broke down. But a simple cold and then ventilation tubes in my eardrums started PET. I cry a lot, which by the way, helps my autophony. Crying makes the tissues in the sinuses and ears swell, shutting off the Eustachian tube.

Please don't apologize if you didn't answer all of my questions. You are not stupid. I am new to these boards, too. It has really helped my spirits to correspond with you and the others. I don't know anyone else around here who has PET. Anyone I talk to about it, thinks I'm crazy.

Did you know that Dr. Poe has it, too? But it's just when he exercises. Then it's gone. He's a small thin man.

If there is anyone out there who has had the Shea tubing method of fixing autophony, please write about it on the Health Boards.

Where do you live in Europe?

Lotje, stay in touch.

Your friend,

Cathy
Oh, my surgery report was lost but I was lucky I had it also somewhere else ;) Here is it again for those that haven't read it before...

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Hi all,

I have returned from Boston and had the PET surgery done by Dr. Poe. I finally met Dr. Poe in real and my first impression was like everybody here already told. He sure is a very nice doctor and very caring for his patients. I was so happy to be his patient. Now at this moment I have COMPLETE relieve from PET!!! I know it's still too soon to draw conclusions but till now I have 100% releive. Yes Remmy, it's addio (Italian) farewell to PET

I will describe my visit to Boston. The pre-op visit at Children's and MEEI visit + surgery:

Before surgery could take place I was examined. Dr. Poe uses a camera [very small of course] and runs it in the nose. On a screen I could see what was happening when I swallow or yawn. Every movement from the ET was recorded on tape. It very soon became clear when I swallow or yawn my ET opened, but stayed open instead of closing by itself. That was the moment my autophony started and fullness in the ear. This could only be compensated by hard sniffing.

What I already suspected was confirmed, I was not one of his worst cases (I still was able to compensate by hard sniffing, though that was many 100’s times every day) However, unfortunately I was still a complex case.
In the past I had twice a cholesteatoma and that was due to a closed ET. My ET seemed to be partly closed but also patulous. The ET is not just a tube but looks more like a valve that exists of two muscled halfs. Both halfs can contract and expand and that way open and close the space between the nose and the middle ear. One half of the muscles was somehow not capable to move (only a little bit) The other half was exorbitantly trying to compensate this lack, causing the tube to become patulous.

After Dr. Poe had a good picture of my ET’s and medical history the decision was made to have the Calcium injections done to correct the ET’s. The fact I was not one of Dr. Poes’s worst cases made it possible to correct both ET’s in this one visit. Normally Dr. Poe corrects only one ET at a time. To correct both sides Dr. Poe has to examine every patient individually to be able to make that decision. I also needed temporary ventilating tubes for a save trip home by plane.

In the pre-op visit I also got a hearing test and tympanogram. The same day I also had to visit the MEEI for another pre-op consult for my medical history and some lab tests (CBC, EKG, BMP and VP)

Two days later the surgery was scheduled. One day before my surgery I felt suddenly very shaky, not so well and suspected to develop some fever. That night before the surgery I was very worried if the operation could take place. Maybe the surgery had to be postponed and I had to extend my stay in Boston and change my trip back to home?

The morning from the surgery I spoke the anesthesiologist and Dr. Poe. Luckily my temperature was not too high (100.2F) and my nose was dry. Both doctors decided to continue the surgery. The surgery was under general anaesthesia.

After the surgery there was no pain to the ears or nose. Only a sorrow throat from the breathing tube. Everything went very well. After the surgery, when I was awoke again, Dr. Poe was also there to see me. He is really very caring.

After the night in the MEEI my temperature was normal and I was discharged from the hospital. The same evening I went back for my last day (and night) in the hotel I developed a terrible cold and had to sneeze a lot. Sneezing is dangerous after an operation like I had and I had to be careful not to sneeze with my mouth closed (not to build the pressure). Blowing the nose is also prohibited. This evening I was again very afraid to miss my flight back because I started to feel less and less healthy. Finally I was able to sleep a little bit and the next day I had to drag myself to the airport, not to miss my flight.

For the final result of the surgery I have to wait some time (at least a month) Then my local ENT doctor can remove the vent. tubes. I hope they are the last I’ll ever have, because the vent. tubes have damaged my eardrums in the past. After my eardrums are closed, I have to experience the result of the calcium injections. To be continued...
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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
[QUOTE=lotje;2901099]Dear Cathy,

Please keep bugging me.... that's fine (it helps). But don't worry about me (makes me feel guilty... you've got your own worries). With the RA & hypo I'm doing OK (the medications work), it is really the PET that spoils it. This week I started taking a drug to beat my anxiety for traveling. It is supposed to work within a few weeks. Never wanted to take them before, but now it's for the right cause: being able to go to dr. Shea (still my first option).
I'd like to tell you that I recognize a lot in your PET-history. The first 1,5-2 years I was desperate, crying a lot too (also because I didn't know what it was, they kept telling nothing was 'wrong' - until they finally found out). Then gradually I learned to cope with it - something I never believed I could. Not that you ever get used to it, but coping is possible, I know that from my own experience, so never think you couldn't. You just have to 'redefine' yourself a little - 'me' becomes 'me with PET'. (AND maybe 'me without PET' again. We know now there are several treatments we can try.) (By the way: the sleeping is better now, the ET does close with lying down, I suppose it always does, because of some laws of nature (gravity). It just takes 5-10 minutes, I wasn't patient enough.)
I'll stop now, feel rather embarrassed about my loooooong postings.
I'll let you know as soon as I hear from any doctor.
Thanks for all your support, it means a lot,
your friend Lotje[/QUOTE]
Hi Lotje,

I'm so glad you get relief from autophony by lying down. I have been so concerned about you when you said your E tubes didn't close when you lie down. I have total relief, too, when I lie down. That is why I don't like to get out of bed in the morning. My ears feel totally normal when I lie down.

I also write long posts, so if you apologize for yours, I should apologize for mine. I always have a lot to say.

I'm glad you are taking medication so that you will feel comfortable traveling because that's what you have to do to get your PET fixed. So make those appointments so when you are up to traveling, you won't have to wait as long to be seen.

Be sure to read what I wrote to Remmy about how to ward off a cold and what not to do to your nose. They all make sense to me.

I have been having a few good days with my worse ear, only PET in the AM and a little in the PM, but not all day. Maybe I have scar tissue growing in there.

Thank you for staying in touch with us.

Your PET friend,

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
Hi there, all of you,

Thank you for giving me such a warm welcome, in a way it feels like coming home. No one, not even our dearest ones, can understand what it is to have p.e.t. If I had never experienced it myself, I wouldn't understand it either. It is great to talk about it, knowing we don't have to explain.

I loved reading all of your posts, some of them made me smile or even laugh. It is wonderful to see we can still keep our sense of humour.

Cathy, you are right, we are real pioneers. Well - at least the three of you are, I am still preparing myself to go west! Although in my own way, I am trying to get things moving as well. I told my new ENT (nr 10) about dr. Poe and dr. Shea. He was very hesitant about reconstructing the E.tube, but he was willing to investigate the Shea-method and contact dr. Shea. (He also knows the drs in the UK that Nik must be referring to, it is a small world.) Now I can tell him about dr. Poe too, the way he wants to perform it. It seems a real development. I also discovered there is an ENT congress in Turkey in June (probably before your surgery, Cathy) where dr. Poe is going to perform a (p.e.t.?) surgery. My ENT will be there too, I'll ask him if he can try to talk with dr. Poe about it. (By the way, your husband seems a real nice guy, looking after you so well, please say hello from me!)
You are also right that I should make an appointment with dr. Poe anyway, if only for a consult. He is so experienced, and he has all the equipment to investigate what kind of p.e.t. we have - every case seems to be different.
I will contact him right away, I understands it takes months before I could see him anyway. By then, I'll know from you what I might be up to. (I really have a real good feeling about te procedure he wants to follow with you!)

Addio, I'm happy for you that your calcium injections work, and it is good to hear that surgery doesn't have to be as bad as one (me) would expect.
I really hope it satys like this a long time, you've had more operations, haven't you, is there one coming up as well?

Nik, I am sorry to hear about your ear drum being ripped, allthough the way you told it made me laugh. It is not funny at all, it is very painful. But I can image how difficult it is NOT to blow your nose when you have a cold! To be honest, I think the ripping was caused by the fluid build-up behind the eardrum. I don't think it was healed enough, it must have been still to vulnerable. Maybe they should have given you another packing (in your outer ear) to protect it? But don't worry, now the fluid is gone, I am sure it will heal much quicker.

Well, I was planning to tell a funny story too (all about ears), but it is getting late, so you'll have to wait till next time. Meanwhile, please take good care of yourselves,

your friend Lucie
Hi Cathy,

I recognize what you told about having your vent tubes removed. Last time at home I had my vent tubes from the surgery removed by my local ENT dr., I also experienced that very strange sound. All sounds were very sharp. Rustle sounds felt amplified. It was so strange. This disappeared after a few days.

Sometimes having the vent tubes placed also causes a shock for the ears. I mostly experienced that when I had a local anaesthesia. Last time at the surgery from Dr. Poe I didn't feel a thing, as I told you before. However, my eardrums are very stiff from the scar tissue. I guess that makes a difference (?)

Yes Cathy, by the JJH I mean the John Jeffries House. It's close to the MEEI and the Charles River. I have been running around the river before I got the surgery. It was very cold then. Brrr. If you like museum, you can also visit the science museum if you have time for it? It's very close to the JJH and quicker to walk then when you travel by subway. The breakfast in the JJH however is terrible :eek: . I cannot start my day on sweet cakes and coffee only. Fortunately there is a fridge and little kitchen in the hotel room :) Well, I guess you already know the place, you have been there before.

Hi Lucie,

Welcome home! ;) Yes I have had more surgeries before. Soon I have another surgery in the Netherlands. It's for my right ear. I have a 2nd look then (to check on a possible recurring cholesteatoma) and I also have a reconstruction then of my hearing bones. I hope it is successful, because this surgery can give me some of my hearing back in my right ear. I hope at least 30 Db extra. Then I maybe don't need my hearing aid all the time. I hope so.

I also read about the congress in Turkey. However, it is in 2008 (15-20 June next year) in Antalya.

Hi Nik,

You scared me about the ripping of the eardrum :eek: . It will take away the fluid inside, but it's not the way anyone likes. It sure must be very painful. Are you sure it heals by itself? Have you been to your local ENT to check it out. How large is the rip? If it's too large it maybe will not heal by itself... Is your eardrum ripped where it was opened before by Dr. Shea to reach the ET? The weakest place rips first.

I hope for you it's not too serious injury. It sounds scaring.

Take care,

Addio
Dear PETfriends,
Sorry it has been a while. Sometimes I feel like I'm done talking about PET alltogether, just as the rest of you, but we aren't, ofcourse. We will have to talk about it as long as needed to find a cure.
Cathy, how are you now? I hope you get LESS nervous as the surgery date approaches, in stead of more. With me, it seems to work that way. Once you cannot change things anymore, you just have to surrender, and trust the doctor. And dr. Poe is a good doctor to trust. He will make things better, not worse. Please let us know how you are.
Nik, how are you doing? I am curious about your 'bad' ear. It sounds to me the surgery just might not have succeeded 100% the first time. I don't think you are 'impatient' at all. Ofcourse you expected to be rid of it in BOTH ears. About you complaints: when I had a cold, there was a lot of fluid in my inner ear. I experienced the same as you: loud echoing of my voice (like speaking in a brarrel) and a full feeling. I figured out for myself it was due to the fluid behind (and touching) my eardrum. Could it be that with you too? And is it clearing up now?
Jenny, welcome to our thread. I don't know about these drops, never tried them, with real bad PET (autophony all day long), there is no point. Also: Patul-End is very aggressive and damages your mucosa. I reckon Premarin might only help if it is connected to the cause of your PET. I assume dr. Poe suggested them to try because your case is not severe enough to operate. If anyone, he is the one who should know if those drops have worked for people in the past.
Addio, is the calcium paste still in place? Is the 'slight' PET you still experience getting better? Up to now, you are one of our succes stories.
Remmy, thanks for keeping our thread alive (and kicking).
Hope to hear from all of you again soon,
take care, your friend Lucy
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
[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?





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