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lib 06-27-2004 08:58 AM

for the undiagnosed dont forget these things as most drs dont bother
a lot of you already know my 10 month ordeal trying to get a diagnosis, i was dxed with everything turns out i have pet, and probably had an inner ear virus last fall. i was dxed with everything under the sun, you must be insistant and get all of the proper tests.
mieneres is often misdiagnosed,
dont forget about the eustachian tubes, they can cause major problems
also sscd, is a condition where bone has eroded in the inner ear bone, the vemp test and a special ct look for this.
there are a lot of things that need to be looked at so dont settle for anything but all of the tests and a complete diagnosis. good luck, lib

8MileSky 06-27-2004 09:29 AM

Re: for the undiagnosed dont forget these things as most drs dont bother
What is pet???

lib 06-27-2004 09:48 AM

Re: for the undiagnosed dont forget these things as most drs dont bother
[QUOTE=8MileSky]What is pet???[/QUOTE]
patulous eustachian tubes, its awful! the e tubes are open, look it up.lib

willsmommy 06-27-2004 11:43 AM

Re: for the undiagnosed dont forget these things as most drs dont bother
Hi Lib, soooo glad that your rounds of wondering what in the heck is causing your symptoms are over! Simply not knowing WHY to me is half the difficulty.

Hope this is you on the start of getting better!

~Ilia xxxxxxxxxxx

lib 06-27-2004 12:52 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
thanks ilia,
the only hope for me is surgery, cant get the first ear done till aug and will have to wait 2-3 months for the second, this procedure is new so i am praying it will work. got the best dr in the world on it tho! take care! lib

petpeeve 07-09-2004 07:20 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
Hi Lib; read a lot of your posted notes yesterday when i discovered this site--nice to know that I can talk to others with the same diagnosis since I have had this for years and never met anyone who has it. so strange to explain to people that your hearing is fine but it is difficult to talk because of the autophony. Most people that have problems speaking have had strokes or vocal cord damage so it is a wierd concept for people to grasp. Have found there is little information since it is listed as a rare disorder and even national organizations dedicated to rare disorders have little to offer in the way of news or research or available treatments. I have been dealing with this for years and that involved the problem with getting an accurate diagnosis like you mentioned. *I had not heard of the sscd or Vemp test and assume when you said ct that meant cat scan. I will go look up those and get more info. Did you ever have surgery and which one--how did it turn out? Thanks for sharing. The best help is sometimes through other patients who live with the same symptoms--even the doctors have a hard time understanding what we actually feel and how frustrating it can be on a daily, 24 hour basis.

lib 07-10-2004 12:00 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
hi petpeeve,
i will be having sugery in august. how many years have you had this? are you noise sensitive at all?
the other tests are to rule out sscd. can you breath air into your ears?
what do you think caused yours?
where do you live?
i will let everyone know how it goes! lib
also do you have it in one or both ears?

petpeeve 07-10-2004 01:25 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
Hi Lib: Thanks for the quick response --we must be strolling through the posts at the same time. I live on the west coast. I have had very minor symptoms of fullness for over 10 years but only in the last 5 years has it become so severe as to affect my lifestyle. The primary change is that speaking in public is almost impossible because I have to raise my voice to a level that sounds like shouting for me but is probably just normal for everyone else. The doctor had asked me about 3 years ago is I was affected by "ambient" noises and I said that my hearing test was perfect and I listened to the radio and TV and music and none of that bothered me. He said I was lucky because a lot of people eventually become sensitive to the noises around them. In the last year I have noticed that. If I go to a movie now with my husband the theatre sound is so incredibly loud that I wear earplugs and it is still loud enough. I have no idea what caused it. I have read that the only cases that they see a direct link between PET and a cause is rapid weight loss due to chemotherapy or anorexia/bulemia. None of those apply to me. I had one doctor say that since I was thin I should try to gain weight and another ENT said that was ridiculous because by the time i gained enough weight to plump up the tissues around the ET I would be as big as a barn. I agreed with him that it didn't make sense. My weight has always been stable anyway. But since most of us as PET sufferers will try just about anything I decided I could suffer through a couple of Krispy Kreme donuts everyday in order to put on 15 or 20 pounds. I did and enjoyed the process but it had absolutely no affect on the PET problem. Did you see my note yet to you about the hormonal nose spray? I would like to hear how that worked for you. I am assuming that it didn't help if you are still going forward with surgery. I hope for the very best and a 100% cure---wouldn't that be grand! How has this PET affected your speaking? Can you talk in restaurants where there is a lot of background noise? Thanks for sharing.

petpeeve 07-10-2004 01:34 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
oops--forgot to answer two of your questions lib--got so chatty I forgot where I was. I wanted to tell you YES, I can inhale and feel that the air is going directly into the ET but that has gotten better in the last year for some unknown reason. I wish I knew why so I could pass on the answer to others. It was a horrible feeling besides just an irritating noise with each inspiration. It is only measureable to me in the left ear that is fully open and the right is that is classified as "floppy" is not aware of the inspiration sounds or the pressure as much. How about you---do you have that feeling that your eardrum goes in and out all the time when you breathe? I can't remember if you are the gal that said she wore earplugs but I read that last night and I had kind of discovered the same thing by accident. Over the years when I spoke I noticed when I was standing talking to someone that I unconciously stuck my finger in my ear. So I tried ear plugs and i found that just having that block seemed to help. I don't understand what is actually going on but I can only guess that the constant movement of the eardrum in and out is annoying and the reason I felt like the ear pressure was worse after talking. I rarely talk (except typing--that is my social outlet these days) but when I do so for more than 10 minutes it feels like I have a dull very mild earache. But with the earplugs I think the movement of the eardrum is restricted and it just helps. I did upgrade to the soft flesh colored ones and got rid of the neon orange ones that resembled Frankensteins bolts on the side of his neck. Tell me more about your surgery if you have time before going in. I will be thinking about you and hoping for the very best. We need a success story in this group and since you are a veteran on the board I am sure a lot of us listen carefully to your experiences and HOPE.

lib 07-10-2004 02:16 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
hi petpeeve,
i am going august 9 for the first ear. the nose drops have not helped me either, i was really hopeing they would. both of my tubes are open but not wide open. i will be having cartlidge and alloderm inserted into the lining of the eustachian tube by a doctor in boston, i live in virginia.
there is also a place in tenn that puts silicone tubes in the e tube.
i am sensitive to outside sounds pretty bad. my eardrums move when i talk and cough, turn my head. how do you cope with this, do you work?
also acid reflux can be a predisposing factor. i am thin also but was told even if i gained pounds it would not go where i need it.
so i am praying that this surgery will take care of this problem as it is ruining my life, job everything.
how did your pet start? thanks lib

petpeeve 07-10-2004 05:38 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
Hi Lib: Looks like your surgery is around the corner. I haven't read anything about the aloderma and cartiladge placement but that sounds better than the silicone since I have read some negative things about that. Do they use your own cartiladge harvested from some other place on your body? Is it a permanent closure of the ET or something that is flexible that would allow you to Valsalva (the blowing of the nose while pinched to force air into the ET to open it and pressurize)? I was never able to do that for years. People always told me to try it since my ears felt plugged but it seemed to make mine worse. No wonder--the tubes were already open and full of air. I guess that is one of the tests used to determine PET also---a sluggish Valsalva reaction.
You asked how my PET started and I am not sure what caused it but it started worsening about 5 years ago to the point that I felt a pressure constantly inside the left ear and a feeling of being overinflated in my entire head. I don't really notice the dizzyness unless I am sitting perfectly still and quiet like in a classroom or lecture environment and then I feel it. I have only had a few occasions where it also included a little nausea. I have a busy life so with all that constant movement and activity I don't notice the vertigo as much as just feeling like I have a head cold that has moved into my ears. I have felt that way for years with no relief.

I have allergies and a stuffy nose all the time, tried allergy shots for 2 years with no results. I had taken shots as a child and they worked well. I have enlarged nasal turbinates (those shelf like filters in our nose). They filter all the junk out and if you have allergies and they tend to work overtime they do grow and cause some blockage in the breathing passages. I noticed that my PET seemed markedly worse after I had the turbinates reduced by diathermy. My breathing was a lot better for a while. Don't know if there is any relation. ENT said that septal repair would help me get more air in through my nose but that just means more air rushing past my wide open ET at this point. I am more concerned about the PET than anything else and breathing better would be nice but if it means worsening the PET, forget it---I will live with a blocked nose instead. And yes, I can understand your feelings of how much it impacts your life. Such a little piece of our anatomy--4 inches of tube that is stuck open--who would ever guess that it could be so frustrating and have such an impact on social interaction. Are you able to go to loud places like a restaurant? I can go but I can't speak loud enough for anyone to hear me so I am basically voiceless in settings like that. Over the years I just gave up---what is the point if you can't say anything or you have to write on a piece of paper. Do you have the same difficulty talking in public settings? Goodluck Aug 9th. I'll be looking for a note that says your feeling fine and back online.

lib 07-10-2004 06:27 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
hi petpeeve,
the cartlidge will be taken from my ear, the little flap in front of the canal, and alloderm, thats cadaver tissue will be placed in the pocket. it is flexable from what i know it does not block the tube permanentley. it is to build the e tube wall up. i dont go anywhere, i hate the noise and dont like to talk so no resteraunts for me, but i am praying that will change soon. i will need to get my other ear done about 2-3 months later.
where did you read about the silicone?
do you have acid reflux at all? how many years have you had this?
i dont cope well at all with it, i am severley depressed.
so i guess you do work?
i also have a snapping sound in my face when i talk its the tube opening and closing, its very distressing! thanks lib

snapcracklepop 07-10-2004 09:44 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
Hi Lib,

I have read many of your posts. I am a comrade in misery with recently diagnosed PET. I have been told by ENT doctors at Mayo that the cause was weight loss. I lost 15 pounds without trying over two years. Did you have weight loss prior to your diagnosis? Were you given any other possible causes? I am working on gaining weight. Have you read or heard anything regarding weight issues?

Did you try the Premarin nose drops? Did you have the snapping sound behind your nose at the onset or did it develop later? My symptoms started in November with the clicking, popping noises and sensation or fullness and pressure in the ears. I also hear my heartbeat.

I have also been diagnosed with TMJ, which was aggravated by a recent thyroid surgery. Have you had any issues with TMJ? I now have the sound of glass breaking and loud snapping behind my nose when I swallow. These sounds have gotten progressively worse since my surgery 3 1/2 weeks ago. I had a tympanogram after my surgery to measure air movement to try to determine if I had PET in both ears. Have you run across any info on symptoms worsening after tests like this? Mine seem to have intensified since this test.

Your upcoming surgery with Dr. Poe sounds promising. How did you get evaluated by him? I know he works in Boston. Any info you can give me about how to contact him would be greatly appreciated.

I am married with two kids. I have been very non-functional since this started and feel I must get some solutions before I go nuts. I am a substitute teacher and had to quit working.

I hope joining this discussion group allows me to gain info and monitor your progress. My hopes are that your surgery will be immensely successful and that I can someday join you in the land of functioning human beings again:)
I look forward to hearing from you.

Your fellow sufferer, SCP

lib 07-11-2004 06:39 AM

Re: for the undiagnosed dont forget these things as most drs dont bother
hi scp,
oh do i know....that snapping sound makes me want to rip my face off!
as for the wieght loss, i was told it could have been a contributing factor, but even if i gained back the wieght it would not help, and i did not lose much. being thin, acid reflux, sinusitis and all the meds caused mine.
yes i have tmj but i was told it is a seperate issue.
i have one child and i am a hairdresser so you can imagine this is destroying my life as well.
per the rules dr. dennis s poe, boston mass
look it up on google or call 411
do you have it in both ears? where do you live? was mayo able to offer anything at all? i cant beleive your the first person i have come across with the snapping. god help us!
there is the shea ear clinic also, they are in tenn.
how do you cope with this? thanks lib
yes i have the estradiol nose spray, not helping me tho.

snapcracklepop 07-11-2004 01:39 PM

Re: for the undiagnosed dont forget these things as most drs dont bother
Hi Lib,

I have lots to discuss with you. At Mayo, I was told my best chance of fixing the PET was to gain weight. I had unexplained weight loss, which was ultimately believed to be caused by a thyroid problem. Over the last year, I lost 15 pounds - about 12% of my "normal" weight. I am trying to gain it back, and have put 7 pounds back on. So far, no improvement in the PET symptoms.

I am very thin also. I had acid reflux with an ulcer long ago (in about 1988). That was my only bout with it. I had strange, constant, sinus-type infections the winter of 2003. The PET started Nov. of 2004. How did the meds contribute to your development of PET? Were they antibiotics?

Do you believe your TMJ is a separate issue? I suspect it could be related to the PET. I wonder if TMJ could cause PET or PET could cause TMJ. What do you do for your TMJ?

I have PET in the left ear. As for the right ear, I sometimes think I have it there too but to a lesser degree. Other times I think I don't have it in the right. Do you have it in both ears?

Have you had a consult with Dr. Poe? What did you think of him? Do you know of anyone with PET who had the surgery with him? Was it successful? Do you have any concern about his use of cadaver tissue? Couldn't he use the patient's own tissue from a tissue graft?

I live in Minnesota. Mayo Clinic told me the first step was to gain weight. They have seen only 5 people with this. All 5 gained weight. It worked for 1 person. Mayo describes it as the shrinkage of fat pads surrounding the eustachian tubes. They said the second step was to try Premarin nose drops (they no longer use a spray). This is a form of estrogen. It could thicken the mucus lining and thereby sort of build up something like scar tissue. They said the chance of this helping was very doubtful. I have not tried it yet. Are you still trying your nose spray? The spray has not made the problem worse, has it?

One doctor at Mayo said the next step would be ear tubes. They told me they are very hesitant to do that because the tubes didn't help any of the other people and they could make the problem permanently worse. One doc at Mayo Minnesota called the Mayo clinic in Scottsdale, Arizona. They've had 3 patients with it. They all tried weight gain and ear tubes. One patient was helped with ear tubes (I doubt that patient really had PET).

According to Mayo, the next step used to be injection of a fatty material directly into the eustachian tube. They never did this procedure but it was done at other clinics across the country. This was a while back and is no longer being done because of complications of operating directly in the eustachian tube area with the location of the carotid artery nearby. Several patients died during the surgery when the carotid artery was cut or damaged. They also said some patients were made permanently worse by this.

Mayo described one final option that they said was extremely risky and could also make the problem permanently worse. Nerves from the eustachian tubes run to a bone in the back of the throat. This area acts as a pulley system, allowing the eustachian tubes to open and close. The procedure is to shatter the bone and thereby inactivate the pulley system, which should allow the eustachian tubes to close.

While any info is good to have, I can't say that I really trust the docs at Mayo. They don't seem to know much about PET.

Do you have any info on numbers of people who have PET? Mayo said it is extremely rare. Have you heard of anyone else trying to gain weight to fix the problem?

Have your symptoms changed over time or gotten worse? Did you have the snapping problem at the start of your PET? If not, how long have you been snapping? I am devastated by the snapping. It is the worst thing about PET. I have only had the snapping for a few weeks and don't know how I will live with it. Mine sounds like metal snapping behind my nose when I swallow. As for coping, I'm not doing well and can't imagine living like this the rest of my life. I saw on-line that someone said (maybe it was you) that this sound comes from the eustachian tube trying to close. While it is horrific, could this mean the body is trying to fix the problem on it's own? Could it be some kind of sign of hope? Or is it just a sign of the symptoms worsening? I suspect my snapping was caused by the tympanogram or a result of the thyroid surgery. Have you ever had a tympanogram or other tests that you felt worsened your PET? The results of the tympanogram showed that i have PET to a very high degree in the left ear. The right ear is questionable.

Do you have any experience with either the PET or the TMJ with the sound of glass breaking? I have a friend with TMJ. She has the sound of breaking glass when her TMJ is bad.

Have you tried tubes in your ears? One of the Mayo docs said tubes change the situation for people with PET. For some, tubes make it worse. For others, tubes make the PET different and possibly more tolerable.

Have you found any things that you avoid because they make your PET worse? Mayo told me to never use decongestants, sleeping pills like Unisom (they have a slight decongestant in them) and to be careful with pain medicine. They thought Tylenol might be okay but advil, naproxin, aleve could be trouble. I have found that I cannot tolerate Tylenol, it makes my ears worse. Aspirin is the only one I will use but I have to be desperate. Even aspirin makes my ears worse. I now wonder if any medication can potentially make my ears worse. I know for sure that the pain medicine given to me in the hospital for my thyroid surgery, made my ears terrible.

Have you found any things that help your PET? Or any things that help you cope better? One doc at Mayo said drinking lots of water would help. I'm not sure on this.

One of the Mayo docs told me PET can affect your speech. Have you heard of this?

Have you heard of anyone losing some of their hearing from PET? Is there any risk of this with Dr. Poe's procedure?

I read on-line that one man believes his PET is from Botox injections in the roof of his mouth. I had Botox injected in eye wrinkles for cosmetic reasons. I had this done 3 times over the last 2 years. I wonder if this could be a factor. The last Botox I had was the middle of November. It takes 2 weeks to be fully activated. Two weeks later, I had PET. All of the ENT docs I have consulted with say there is no connection and that Botox is safe. I am not convinced.

Do you have any other weird symptoms elsewhere in the body that you think could be related to your PET?

How long have you had PET?

Have you had anxiety from it? I sure have.

Have you been to the Shea Clinic? What do they do for PET?

Thanks for discussing all this with me. It sure is great to have someone else who understands...


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