Hi Lib:
Thanks for the note and answering my questions about talking. I haven't seen people say much about their speech being soft or having to cut back on talking in a lot of settings so I was worried that I might actually have something else. I have had two endoscope exams- none video which I would prefer so I could see the results myself--but at least one doctor said he could see the ET was wide open and the other ear was semi-patulous. The patulous one is the one that drives me nuts because of the pressure but at least I don't have the spasms that a lot of people are describing--those sound even worse. But I don't get any of that clicking either so ..... my next step is to get an MRI with contrast to make sure I don't have a brain tumor or anything else going on. I get dizzy or lightheaded on occasion--do you ever feel that way because of the ear pressure? I don't notice it when I am busy and walking around but when I sit still I feel a little like the room is moving.
That article was about fat grafting--isn't that the same as the Alloderm? I thought the Alloderm was a fat graft from a cadaver. Do you have to get the grommet in your ear afterwards and how often is it replaced? Did Dr. Poe say anything about the danger of hearing loss with long term ventilation tubes? I guess at this point it doesn't matter that much since getting rid of the PET is your biggest concern. This condition can drive you bonkers because there never seems to be any relief. Hopefully with the surgery you will be back to normal. You said Nathan had a complete recovery? I will go look under his name and read his posts. I did see where it looked like he described having the spasms first and then the Botox treatments cured that but gave him PET. Which did you have first--PET or the spasms? Will you be given general or IV anesthesia? I had IV sedation before and it makes the procedure a breeze--you literally don't remember a thing until you wake up. I figure I can handle any after surgery pain as long as I am in my own bed and home. I will go online and see if I can find Dr. Poe's phone number at the Boston Institute and ask them to send some info.
The article that you might want to read can be found by doing a internet search on EntrezPubMed. From there you can do a search for any medical condition you want. PET will pull up all sorts of articles and the author of that article for fat grafts is from the House Ear Clinic in LA. His name is
Doherty JK, Slattery. Look for the article entitled Autologous fat grafting for the refractory patulous eustachian tube. Maybe Poe is the only one doing the cadaver tissue placement--I wonder if that is the procedure that is the newest that I have been hearing about--must be since he is the leader in the field as far as surgery. I sure wish the FDA drug study had worked for me. That would have been an easy fix.
Well best wishes to you. You will be on my mind all day on the 9th and hope that your procedure is easy and you have full recovery. You will feel like superwoman if you can get rid of this PET and talk normally again.
Hi Lib:
Thanks for the note and answering my questions about talking. I haven't seen people say much about their speech being soft or having to cut back on talking in a lot of settings so I was worried that I might actually have something else. I have had two endoscope exams- none video which I would prefer so I could see the results myself--but at least one doctor said he could see the ET was wide open and the other ear was semi-patulous. The patulous one is the one that drives me nuts because of the pressure but at least I don't have the spasms that a lot of people are describing--those sound even worse. But I don't get any of that clicking either so ..... my next step is to get an MRI with contrast to make sure I don't have a brain tumor or anything else going on. I get dizzy or lightheaded on occasion--do you ever feel that way because of the ear pressure? I don't notice it when I am busy and walking around but when I sit still I feel a little like the room is moving.
That article was about fat grafting--isn't that the same as the Alloderm? I thought the Alloderm was a fat graft from a cadaver. Do you have to get the grommet in your ear afterwards and how often is it replaced? Did Dr. Poe say anything about the danger of hearing loss with long term ventilation tubes? I guess at this point it doesn't matter that much since getting rid of the PET is your biggest concern. This condition can drive you bonkers because there never seems to be any relief. Hopefully with the surgery you will be back to normal. You said Nathan had a complete recovery? I will go look under his name and read his posts. I did see where it looked like he described having the spasms first and then the Botox treatments cured that but gave him PET. Which did you have first--PET or the spasms? Will you be given general or IV anesthesia? I had IV sedation before and it makes the procedure a breeze--you literally don't remember a thing until you wake up. I figure I can handle any after surgery pain as long as I am in my own bed and home. I will go online and see if I can find Dr. Poe's phone number at the Boston Institute and ask them to send some info.
The article that you might want to read can be found by doing a internet search on EntrezPubMed. From there you can do a search for any medical condition you want. PET will pull up all sorts of articles and the author of that article for fat grafts is from the House Ear Clinic in LA. His name is
Doherty JK, Slattery. Look for the article entitled Autologous fat grafting for the refractory patulous eustachian tube. Maybe Poe is the only one doing the cadaver tissue placement--I wonder if that is the procedure that is the newest that I have been hearing about--must be since he is the leader in the field as far as surgery. I sure wish the FDA drug study had worked for me. That would have been an easy fix.
Well best wishes to you. You will be on my mind all day on the 9th and hope that your procedure is easy and you have full recovery. You will feel like superwoman if you can get rid of this PET and talk normally again.
hi petpeeve,
i get light headed and mild dizziness when i move to much, i dont know why, maybe the ears. i did find the info on pubmed the other night.
as far as alloderm look up alloderm implant, it will explain what alloderm is, it does not need to be replaced it may dissapate some and you mat need more but the hope is to get new tissue or scar tissue to grow.
you would only need a tube in the ear if it were over corrected but that has not happened to anyone.
i think poe is the only one that is doing this, where did you hear about a new procedure?
its general so i guess is got to be iv, it cant be gas because he has to go up through the back of the throat.
i had pet first and then the spasms but they stopped thank god.
this is a miserable condition and i will have the tubes closed if it comes to it, i can handle feeling this way.
did you find dr poes number?
lib
I've never met anyone else with PET only those on this site.
I've had it for 4 years or so
Drop me a reply if you get this and we can discuss coping strategies.
Aja: You wrote that post a long time ago but if you see this I would like to know what coping methods you use for PET. For some reason the PET site was closed down and it was the only thing I found helpful. PET is such a specific disorder that it doesn't do any good to read about eustachian tube disorders or other problems of the ear that involve liquid in the ear. So I am trying to find some links to those of you that say you have a definite diagnosis. The only thing I have found helpful is not talking but that is a huge social change. I am interested in what you do to help with the problem of your own voice being so loud inside your head when you speak. Thanks.
Lib: what is going on? I am sorry to read your recent post that the spasms are still horrible. What does the doc think the reason is? have they increased since your surgery? I wonder if that aggravated those upper tensor muscles. Are you having the tendons cut? I sure hope you get some relief. I went to ENT recently for check up since nothing seems to help and nothing gets better. It seems like the specialists don't seem to understand how disabling the autophony can be. Or they just don't care about that aspect. It is disappointing to say the least. I have pretty much given up. This chat site has been helpful just knowing that others actually exist with the same rare condition but it seems like all options have been exhausted and beyond just moral support for each other there isn't much else left to chat about and share. I just hope your condition improves and will check in occasionally to see if you are doing anything new to help the myoclonus condition. Good luck PP
Lib: what is going on? I am sorry to read your recent post that the spasms are still horrible. What does the doc think the reason is? have they increased since your surgery? I wonder if that aggravated those upper tensor muscles. Are you having the tendons cut? I sure hope you get some relief. I went to ENT recently for check up since nothing seems to help and nothing gets better. It seems like the specialists don't seem to understand how disabling the autophony can be. Or they just don't care about that aspect. It is disappointing to say the least. I have pretty much given up. This chat site has been helpful just knowing that others actually exist with the same rare condition but it seems like all options have been exhausted and beyond just moral support for each other there isn't much else left to chat about and share. I just hope your condition improves and will check in occasionally to see if you are doing anything new to help the myoclonus condition. Good luck PP
pp,
they are the same, no different from before the surgery or after, although the fullness is better.
my mri was normal, i go back to the neuro tomorrow. i will decide what to do then.
i know several people who were given back there freedom from pet, dr poe is your hope, why give up....when you know he can help you?
lib
Hi there! I have been lurking for awhile, but this is my first time to post. To give you a quick synopsis of me: I had brain surgery 3 years ago to remove a blod clot on my brain stem - thank God I came out of it almost exactly as I went in. I can still walk, talk, drive, etc. No seizure drugs needed. However, the left side of my head is "dentist numb" and I can now hear my heart beat, blood flow, and my voice booms in my head like there is water in my ear. I have gone to numerous doctors and according to them "There is nothing physically wrong with me". How frustrating is this to have them say that and know that obviously there is. I know I am not in physical pain, but this affects me emotionally. I actually had it "pop" back to normal about a year after the surgery, but it only lasted a few minutes. But this entire week, it has been "popping" back to normal every time I lay down. Unfortunately, I cannot work laying down. It's bitter-sweet to have my hearing clear up knowing that it will go back to crap the minute I get up. This has never happened for this long. I am going back to a doctor to see if they know why it's doing this and if there is anything, which there probably won't be. Sorry to vent. Thanks for "listening".
possible patulous eustachian tube, i am no doc but it sounds like it could be.
dr dennis poe in boston is the only doc that can do surgery for this.
good luck
I've had a problem with my left ear for about 4 years now (since I was 13). I've seen so many doctors, been diagnosed with mental problems (even though I keep saying that it's depressing to be in so much pain you can't have a social life), had a tube placed in my ear because they thought it wasn't opening properly, and I'm just going crazy. I'm at the point where I've completely withdrawn myself socially because the pain is just too intense to handle whenever I talk. The best years of my life, just gone to waste. No one can understand what my problem is. They don't get how a "POP" can be so overwhelming or how it could take over your life. But the more research I do I'm almost positive that my problem is patulous eustachian tube.
My left ear does this HUGE pop, my voice seems so loud that I can't think of anything else except how much it hurts, then it starts spazzing out and often I hear myself breathing really loud in that ear. My sinuses also really hurt, and I get terrible migraine headaches. This isn't like once every few days, it's constant. Vicodin was giving me some relief for a while when I got my tonsils taken out (they thought that was the problem...nope) but now it seems I've grown tolerant to the medication. Plus, it's running out. I used to have so many friends, so much fun, I am such a happy person, but I can't take this pain anymore. I don't know what to do.
I was hoping that someone could answer a few questions for me. Is there a surgery that can be done to fix Patulous Eustachian Tube? If so, will you lose your hearing in that ear? Is it effective, and is there any other effective way to cure this disease? PLEEEEASE HELP me . I NNEEED YOU. I'm about to give up.
hi,
i have a few questions.
when you say your ear spazzes out, can you describe this a bit better? do outside sounds bother you?
the area that your sinuses hurt, any other sensations?
any other symptoms that could be a clue?
dr poe in boston does surgery for p e t, you will not lose your hearing. he is a top dr and takes great care of his patients.
there is also a nasal spray designed to swell the e tube up, called patulend, you have to do a search on it and order it.
dont give up. there are options
lib
Hi,
I have been suffering from PET for about a year. It is really debilitating. Has anyone out there found a cure? Doctors I have seen just put me on decongestants and nose sprays. What a joke!
I am seeing a holistic health practioner and she says it is due to an overall drying out of my body (yin deficiency in Chinese medicine). I am on herbs and acupuncture right now. I feel great....my PET is ever present though.
I live near the House Ear Clinic. Does this surgery that everyone is talking about work? Would it be worth an appointment?
I am at my wits end. It is becoming increasingly difficult to enjoy life with this condition. Is there help out there?
Hi...I am very new to this whole talking about medical issue on the web but, when I typed in Dr. Poe's name and saw the comments I had to get more info. I have been suffering for the last 7 months with Eustachian Tube Patulous on my right side. At first no one knew what it was they put a tube in my ear. The second doctor knew what it was and tried to fix it with a Lazar surgery only causing infection and a lot of discomfort and pain. I have just been referred to Dr. Poe who is 5 hours if not more from were live in NJ and before I make the trip and spend the money I want to get some info on him Can you help me? I have read some of your postings and I know you kow how it feels to hear yourself breath and I would like to get over this as soon as I possibly can is Dr. Poe the way to go?
Hi...I am very new to this whole talking about medical issue on the web but, when I typed in Dr. Poe's name and saw the comments I had to get more info. I have been suffering for the last 7 months with Eustachian Tube Patulous on my right side. At first no one knew what it was they put a tube in my ear. The second doctor knew what it was and tried to fix it with a Lazar surgery only causing infection and a lot of discomfort and pain. I have just been referred to Dr. Poe who is 5 hours if not more from were live in NJ and before I make the trip and spend the money I want to get some info on him Can you help me? I have read some of your postings and I know you kow how it feels to hear yourself breath and I would like to get over this as soon as I possibly can is Dr. Poe the way to go?
Thanks for your help!
Hi.
If you like, you may join us here on this thread on HB:
[url]http://www.healthboards.com/boards/showthread.php?t=475298&page=32[/url] (which has been closed)
Re: Eustachian Tube Catheter 
