I have been reading these boards for about 2-3 years now....I only post occasionally. I think I just like the company of people with the same problem as mine (they really understand)(PET).... This is my question... First of all...I have had this in my right ear for 22 years--still dealing with it..many doctors, many tries at curing, and so on and so on....You know the story...I have lost about 70% hearing in that ear because of scar tissue from the surgeries. About 2 months ago--my left ear began giving me problems. Believe me--I recognized the signs! I know it is eustachian tube! However, this is different. There is all the normal annoyances, i.e. popping, unequal air pressure, sound of my own voice and breathing, etc. But, I went to bed and woke up the next morning totally deaf in that ear! (I think it was from lying on it!) After about 2 hours, the hearing returned-- but I don't think all of it. Now, I have intermittent problems with that ear of PET...but I absolutely cannot lay on it. It will mess up beyond belief and take forever to straighten out at all. When I lie down at night, I can actually push (very slightly) just beneath my ear lobe & completely close off the hearing--I mean totally deaf..What in the world is going on??? This never happened with the other ear....Doctors frustrate me so much because I usually know more about the condition than they do... Have any of you ever experienced any of these symptoms??? I think I may have to give in and go to the doctor... I am afraid of losing my hearing all together! I am really scared & don't know what to do..If I go to the doctor, I am so afraid to let him touch me--because he could do more damage than good...If they want to do a hearing test--they will put on those headphones and that puts pressure on the ear and also creates a suction and that causes problems also. Most anything will cause that eustachian tube to mess up....Any suggestions??? Thanks!
What kind of surgery do they perform for PET? I have read of several Drs referred to as 'expert' on this board such as Dr. Poe in Mass. and Someone from Johns Hopkins. Have you seen any of them?
You have to remember that I started all this 20 years ago (April 1982!) How could I forget?? At that time, PET was totally unheard of. I saw numerous doctors. Most of them did not have a clue. I was finally diagnosed at the Scott-White Clinic in Temple, Texas--but the doctor told me he could not do anything.. They tried ventilation tubes, decongestants, other stuff that I sniffed up my nose; I have tried Chinese herbal medications....I had the surgery done where they insert a catheter in the eustachian tube...I had no luck...After much frustration, I began to feel I would have to live with this...For quite a few years--either it seemed to be better or I was getting used to it--but now the other ear is bothering me & it seems to be worse than the first. Anyway, no, I have not seen those doctors..I had written letters to doctors all over the United States in the beginning--but, again, that was when they knew nothing about this...I am very interested in Dr. Dennis Poe in Boston. I have been keeping up with that on the boards... I am anxious to hear what others have to say after seeing him & after time goes by--side effects, etc... Anyway, I will keep reading the boards & post anything I try that seems to help......
Maggie Jane,
I admire your fortitude and persistance. Mine started in 1999 and it seems like forever ago. Like you said, about the only comfort one can take from this is that we are not alone. I have a wonderful, supportive wife and parents but as you noted, noone can truly understand exactly what it is like that is not living (trying to) with it.
I have a few questions for you. Are your symptoms always the same or do they shift. Mine seem to change day to day, even minuite to minuite sometimes. This is the range they run through-
1.) roaring sound like blood running through tube. temporarily relieved while pressure applied to neck in certain spot right behind earlobe.
2.) feeling of fullness in ear. feel like i have to "snuff" to clear eustacean tube. (I think this is starting to cause problems with my good ear-groan)
3.) clicking and popping sound when swallowing like liquid being forced through a constriction
4.) sound of own breathing amplified in ear. while in this condition unable to 'clear' ear by snuffing like when feeling is just fullness. noise stops while holding ear completely shut. Find that an expandable foam earplug relieves the breathing noise, but of course makes it difficult to function in public (something I find myself doing less and less of.)
usually only one of these at a time, back and forth with these 4 things, and when they are not present of course there is always the tinnitus ringing away.
I have not seen an ENT since '99 so I have to get the ball rolling again as, like you, It is becoming unbearable. Please keep posting with anything that you learn and I will do the same. I am not going to stop until I find some relief or die trying, as I cannot enjoy life like this at all.
I wish you all the best of luck and lets hang in there. At least we're not in an empty boat!
Doug,
First of all---don't admire my fortitude. I have certainly thrown my share of screaming, crying fits. Unfortunately, it is my family (the people I love the most--husband, daughter, 2 sons) that get to see all of that and bear the brunt of it. Like you and everyone else in this "boat"-- I often would find myself avoiding people or going somewhere for fear I would be having a really bad ear day & I could not deal with it and people, too--Now, for your questions...I had to print it out so I could remember it while I type... Maybe Alzheimers is the next phase of this affliction! (not really--and I shouldn't tease or even make jokes--but--sense of humor is critical!) Okay--1.) The roaring sound--I have always called it a sound like the ocean. I have told my husband that I hear the ocean in my ear--and yes, I have found the same as you. It can be relieved by certain "pressure points" or sometimes just shoving cotton in there--but that obstructs hearing--which I don't find nearly as annoying as the "ocean." 2) the fullness...that is a feeling that I don't have all the time--thank goodness. I just would not be able to stand it. I have said it is like I have taken a pitcher of water and filled my ear full to over-flowing--but there is nothing there. When I am like that--I am completely distracted and useless. I had gotten to where I would put my fingers under my nose and sniff--the opposite of blowing--and that would relieve--but not for long...usually until I swallowed again and they popped again--which leads to 3.) Popping for no reason. I used to get a rattle like cellphane paper! I sat straight up in bed one night because it was so loud (to me) and I screamed that I could not do this any more! It scared my husband to death..I told him what I was hearing & asked him to put his ear next to mine to see if he could hear it also--HE COULD!!! I think that was a real wake-up to him as to what I was dealing with.. Fortunately, that has almost totally subsided. The popping is still there every now & then--but I can deal with that also... Now--#4.) That is the one that has just nearly put me over the edge. The sound of my breathing and talking amplified in my ear. I have tried to tell doctors, etc. that I am hearing my voice from the inside--not the outside. Also, it is so loud, that if someone else talks while I am talking, there is no way I will hear them. Same thing with eating or chewing...I cannot hear if I am chewing--especially something crunchy! I also used to really love to sing (not that I am good or anything--but you know, like with the radio, etc.) I have not done that in years--it is so annoying. For some reason, singing is the worst thing of all. Sometimes I really can feel sorry for myself--thinking of all this stuff. I actually will watch people on TV having a good time exercising or something and think, "I wish I could do that--but exercise or being out of breath really messes me up!" I don't say things in conversations because it is just not worth the annoyance to me to talk. I do a lot more listening than talking. Then, I will have some good days--not normal by any means--but days that it is good enough that I think, "hey, I can deal with this! I am going to be okay." I always think, if they can't find a cure...just please let me learn to adjust and not notice it anymore! One thing I have thought of...you know how stuffing something in your ear helps a little of all the symptoms but obstructs hearing? Well, I wondered about one of those small hearing aids? (Vanity went out the window years ago!) If I could put one of those in my ears, maybe it would help the symptoms & I might be able to hear also...Of course, my hearing is nearly gone in that one ear anyway...but the other one--the hearing aid would have to be turned way down..Anyway, it was just a thought. The other day, I actually had all this clear liquid run out of my ear (the one that is new to this) and I was so hopeful that it would be better. It was for a few days. I keep hoping that whatever caused that build-up--it would happen again and I would be okay again... I have an appointment with a surgeon (actually, world-renowned) in Oklahoma City on July 14th. He is the one I started out with years ago...he has developed implants for deaf people, etc...he also did not know much about PET 20 years ago. I took him the information on the catheter surgery myself. I had received it from a very nice surgeon that I wrote to in Los Angelos. Also, now that I know where Dr. Poe is, I know that the Massachusetts Ear & Eye Infirmary is one that I wrote letters to in 1982...I am definitely going to follow up on that--I am taking all the info. I have received from these boards to my doctor in OKC to see what he thinks. I'm afraid this has gotten really long....Well, if you are like me---you won't mind reading because you are "talking" to someone who really knows what you are dealing with and really cares! I do wish you the best of luck, also..and hang in there. Hey! I have about 17 years more experience with this....I do have a question for you also...do you have good days and bad days? I mean is it really unbearable sometimes and then sometimes not?? I hope it is that way for you--I know what those "bad" days can be like! Jane
PET--hearing loss associated??? 
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