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Old 07-19-2013, 06:54 AM   #1
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Red face Patulous Eustachian Tube Dysfunction Help Please

I am just been diagnosed with Patulous Eustachian Tube Dyesfuncion.

My only symptoms are very high ear pressure, a sense of imbalance, and a clicking when I swallow or pop my ears.

How is this problem treated? What are some options for me?

My ENT wants to try an ear tube, which I am not against, as if it does not work or makes it worse it can easily come out, but I am looking for long term solutions.

I understand there is a doctor in Boston who puts in catheters, but what I read about this was from several years ago.

Help. This is not fun.

HIker53

Last edited by Hiker53; 07-19-2013 at 06:55 AM.

 
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Old 08-15-2013, 01:59 PM   #2
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Re: Patulous Eustachian Tube Dysfunction Help Please

I was diagnosed with labrynthitis 16 months ago. At that time, I had ear pressure, balance, and tinnitus symptoms. However, after many rounds of oral steroids and 6 months of nasal steroids (flonase), my ears now pop/click while chewing, talking, swallowing and for no reason at all. I feel off balance most of the day unless I'm sitting. My hearing is also sensative to external noises as well as my own voice. All my symptoms get worse with exercise and any medication that is "drying".

I was diagnosed with PET about 3 months ago given that both ear drums move when I inhale through one nostril as well as above symptoms. I was put on permerin for 3 weeks- didn't work. I was then given a saturated potassium iodine solution (SSKI ?) for 3 weeks- didn't work. Lastly, I bought the Patchulend solution from Dr D in Santa Barbara and tried it for 3 weeks- didn't work. This first thing my Dr tried was a myringotomy (small cut on ear drum to release pressure) in one ear for a quick diagnostic check to see if tubes would help. Bad idea! the popping was definitely 50% less but all other symptoms shot through the roof.... IN MY CASE.

I'm now trying my own solution of saline liquid mixed with Vitamin E liquid. My thinking is to lubricate the E tubes and get them to stick again. So far, its been two weeks and its a minor help.

I'm driving up to the House Ear Clinic in LA tomorrow to discuss surgical options but not sure what to expect. Drs don't seem to have a good handle on this debilitating condition.

 
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Old 08-18-2013, 09:32 PM   #3
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Re: Patulous Eustachian Tube Dysfunction Help Please

I struggle with this as well...

I notice I get these "attacks" after exercising. I can hear my breathing and also my own voice in my left ear. Sometimes I can even hear my own heart beating.

One thing that helps me is bending over and putting my head towards my ankles. It instantly gets rid of the autophony but it has the tendency to return after a minute or so. I just keep on doing it until it goes away. This is a well-documented temporary fix.

I have gone many months without this symptom but just yesterday, it returned after working out at the gym...

it is frustrating.

 
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Old 09-24-2013, 06:58 PM   #4
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Marie 67 HB User
Re: Patulous Eustachian Tube Dysfunction Help Please

How did you get this condition? I have read that many things can cause it, whether that is true or not I don't know. I'm concerned that I might have it. How loud is your autophony and heartbeat sounds when this attack happens to you? Do you have any popping sounds right before an attack? Is it just one ear or both? Have you used alot of nasal sprays in your lifetime? How did the doctor diagnose you, I mean what did he do to determine this diagnosis? Were you having symptoms when you went to the doctor? I've read that this conditon is rare, but it seems to me that there are many people on these boards that have this condition. If there are that many here, I can only assume that there are many more in the world undiagnosed. So it may not be as rare as they say that it is. Do you find it difficult to talk? Is it the louder you talk the worse it gets? Does rest seem to help the condition? I've also read the term hyper, patent, and semi-patulous. Do you know what the difference is between all of these descriptions? I can't seem to find anything online except describing patulous. If you can help with this info that would be great.

 
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Old 09-26-2013, 01:56 PM   #5
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Re: Patulous Eustachian Tube Dysfunction Help Please

Can anybody tell me if there are various degrees of a patulous tube? The ent said I didn't have this but I'm not so sure. I have read about alot of people being misdiagnosed that have this condition. It feels like there is air in my ear slightly. I had fluid behind my eardrum and had a myringotomy. I feel like fluid has returned but I don't go back to the ent until the 7th. I don't feel like I'm hearing right. My hearing is dull. I also have pressure in my ear and an off balance feeling. Does one have to have loud autophony to have this condition? How can you know if your doctor has accurately diagnosed you?

 
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Old 09-27-2013, 11:21 AM   #6
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Re: Patulous Eustachian Tube Dysfunction Help Please

Marie 67

I developed an acute respiratory infection which progressed into, I’m told, a viral inner ear infection perhaps viral Labyrinthitis. At the onset, I had extreme ear/sinus pressure/dizziness (not vertigo)/tinnitus, extreme headache coupled with excruciating dental pain, and diarrhea. After many rounds of oral steroids, anti-viral meds, and a 6 months nasal spray Flonase, my ears started to pop/crackle/itch etc.

My autophony is very bad. I cannot raise my voice past a whisper because my brain rattles and the tinnitus intensifies times ten. I don’t hear my heartbeat but I do hear my footsteps post exercise. I was initially diagnosed with superior canal dehiscence confirmed via CT scan (1mm- left ear only); however, subsequent VEMP tests showed no dehiscence influence and SCD didn’t answer why my right ear also has issues. I don’t get attacks, it’s just constant with periods of amplification if I raise my voice.

I was diagnosed with PET given that my ear drum sucks in when I pinch one nostril and deeply inhale through the other nostril. Also, I was “endoscoped” with a camera which was great. The dr was very good at explaining what was being shown on the monitor as the scope passed through the nostril. He commented that the opening of both eustachian tubes were abnormally wider than should be but didn’t think it was an extreme case of PET so he termed it “semi PET”. The only relief I get is when I stand on my head and my right ear completely stops popping but my left still pops to a lesser extent. I believe the blood is rushing to my head, causing my ETs to swell; thus, temporarily narrowing.

One thing my Dr was very adamant about is that PET doesn’t cause “fluid” build up. The pressure you feel is caused by the air pressure delta of having open ETs. I too had an myringotomy performed in one ear to test if putting ear tubes would help. It was HELL! The popping was 50% reduced but the autophony and tinnitus was much worse. I couldn’t wait for my ear drum to heal from it. The Dr who performed it actually thought it was a success and wanted to “dilate” my ETs!

 
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Old 09-27-2013, 11:00 PM   #7
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Re: Patulous Eustachian Tube Dysfunction Help Please

I had an ear infection 3 months ago and was left with fluid in my left ear. The fluid was just driving me crazy. About a week before I had the myringotomy and the fluid was drained from my left ear, I started having pressure issues with my right ear that would come and go. About that same time I started feeling sinus drainage down the back of my throat and it was making it scratchy and inflammed. I took antibiotics for a few days and the pressure in my right ear left for a bit. About a week after that I had the myringotomy on my left ear and it felt good coming out of the ent's office but I started having alot of pressure in the right ear then. I didn't want to address it at that moment because I didn't want a hole in my other eardrum at the same time. Since then the pressure symptoms have been at their worst when I am riding in a vehicle. This being just my right ear. The ear that had the myringotomy hasn't had any pressure issues since the surgery. Meanwhile in the last two weeks the pressure in my right ear has been coming and going. But today the pressure has gotten worse and won't stop. My right ear is starting to hurt too. I also feel alittle of balance. No vertigo or anything like that. I've been attributing the off balance feeling to the ear that had the myringotomy but now I'm starting to think I was mistaken about that and it wasn't the left ear but my right with the pressure issues causing me to be alittle off balance. Fluid behind the eardrum will cause pressure and also cause you to feel off balance as well. I had the myringotomy in my left ear two weeks ago and I am just now starting to hear more normally. It's not quite there yet but I feel that it will heal ok. I do have a scab on my eardrum from the procedure and the ent said that is not helping my hearing any. It can't be pulled off yet at this point. Might do damage. I probably should have addressed the pressure issue with my right ear but I didn't want to have two eardrums with holes in each at the same time. That would make it just too difficult to hear. So in that sense I am glad that I have waited and if the pressure doesn't let up over the weekend I'm going to go back to the ent Monday morning and hopefully he will do a myringotomy on my right ear and get rid of this pressue and also drain my right ear of fluid if there is any. Before the ent did the myringotomy he got out a big tuning fork and asked me if I could hear it in my head. I heard it on my left side louder that I did my right. But I did hear it on my right side as well. Like I said I didn't want to address the issue because the pressure in the right ear had been coming and going for about a week at that time and since it had just started I was hoping that it would just resolve itself. But it seems like it just might not do that at this point. The fluid in my left ear had been there for 10 weeks! That was top priority to get that fluid out of my ear due to the time it had been in my there and how it was making me feel. Thank God it wasn't glue ear! I just hope I can get this pressure issue with my right ear resolved this week so that I can finally start putting this whole nightmare with ear issues behind me. It sound like you might have eustachian tube dysfunction like I do. Sounds like your tubes are too open and mine are too closed. What I would like to know is what starts all these e-tube problems. The ent doesn't think that I will need a grommet so if I have to have the procedure done on the right ear I would think it would be the same way. I know you said it made things worse for you. I have heard that it does that alot if you have pet. I hear that tubes don't help and that they actually make pet worse. That would make sense because a tube allows air into your middle ear. I would think that someone with pet wouldn't need more air in their ear being that their e-tubes are letting too much in already. Sounds like some doctors just don't think simple things thru before they want to do them. I'm sorry to hear that you have this. I hate to hear when anyone has it because it has to be very aggravating and annoying. If it's as bad as fluid in the ear, which I imagine that it is probably worse. I've heard it referred to like Chinese Water Torture. Have you went to see Dr. Poe in Boston about this? If you have a semi case your more than likely to have a better chance of getting rid of pet with surgery. I thought I read that Poe uses catheters for the more extreme cases and uses some type of skin or fat graft for the more mild ones. I've heard of the catheters coming loose and falling down the throat causing one to choke them up. Did your doctor ever tell you what caused this to happen to your e-tubes? You said something about dental pain. Some say there might be a connection between one's jaw being out of alinement or TMJ and eustachian tube dysfunction. I imagine that could mean either way, open or closed tubes. Someone on here also said that they got pet after they had gallbladder surgery. I know that when you have your gallbladder removed that it causes problems with the way you metabolize fats in the body. If fat is missing from the e-tubes that would make sense. I've also read from a Dr. West that gallbladder surgery causes alot of older people to slowly go downhill after having it. He didn't specify an age but I'm guessing he meant 65 plus. Needless to say he didn't recommend the surgery for anyone this age. My aunt had this done when she was around 40 and didn't seem to have a problem from it. Left her with a large ugly scar though. Have you ever tried the patul-end nose drops? I've read mixed things about them. I don't think they work on severe cases, probably better for the more mild ones. Might be worth a try.

 
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Old 09-29-2013, 05:38 AM   #8
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Re: Patulous Eustachian Tube Dysfunction Help Please

Marie 67
Yes. I have sent all my medical history/records/tests/scans etc to Dr Poe's office. Its been 5 weeks and I have not heard back from them. I'ts extremely difficult and frustrating to contact his office. There doesn't seem to be anyone answering the phone. I've called at least 10 times and only got hold of the receptionist once. Other times, I simply left voice-mail messages but no return call. My House Ear Clinic Dr also has tried to contact Dr Poe's office as the House Ear Clinic in Los Angles doesn't know how to treat PET very well.

I've tried both the Premerin and Patulend drops... nothing works

 
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Old 10-01-2013, 06:37 PM   #9
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Marie 67 HB User
Re: Patulous Eustachian Tube Dysfunction Help Please

Can you tell me how long it took for you to heal from the myringotomy? I'm still not hearing the way I should and it has been 2 weeks and 2 days. I still have a scab on my eardrum and the ent said that is why I'm not hearing quite as well. Do you know anything about having a scab after this procedure? This is driving me crazy.

 
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Old 10-02-2013, 09:48 AM   #10
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pedro-9321 HB User
Re: Patulous Eustachian Tube Dysfunction Help Please

It took about 5-7 days to heal and no scab is noticeable on my ear drum. Every damn Dr keeps saying, "your ears look great"... well thanks doc!

 
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Old 10-02-2013, 11:27 AM   #11
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Marie 67 HB User
Re: Patulous Eustachian Tube Dysfunction Help Please

Is there any way to find out Dr. Poe's home address and write him a letter? Some other way of contacting him other than his office? Do you think those meds that you were taking for 6 months caused the pet? Has any doctor given an explanation for it? I personally don't think it is caused by weight loss, or any of the other explanations that doctors suggest. It's either a virus or bacteria that eats away at the collagen of the tube or it might be hormone related. I don't think it has to do with dehydration. That might make it worse for someone with pet but I don't think it ever causes it. Why isn't this Dr. Poe transplanting eustachian tubes just like they do other kinds of transplants? Why has nobody ever brought that subject up? They should be able to take your DNA, grow you a new one in a lab and then transplant it. I wonder if that would work. I think someone needs to be doing these kinds of experiments instead of injecting junk or installing plastic in e-tubes that eventually falls out. I have never read of an actual cure for this. Ever since I learned about it, I have been afraid that I have a mild case of it. Does one have to have autophony to have this condition? I've read that a person can have fluid in there ear and have a patulous e-tube. Then I've read that the tube should drain out if it's patulous so I don't know which to believe. Do you know anything about fluid in the middle ear? Have you ever had a fluid issue with your ears?

 
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Old 10-02-2013, 12:40 PM   #12
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Re: Patulous Eustachian Tube Dysfunction Help Please

I have already sent Dr Poe all my information and supposedly the House Ear Clinic has given his office my contact info as well. I understand he is a very busy doctor and will probably take another few months to get an appointment.

I’m not certain the meds caused my PET because I had most of these symptoms at the onset of the “infection” before all the meds. One doctor ordered a full blood panel and observed my low Testosterone levels but cited that acute infections can drop a male’s testosterone level by as much as half; nonetheless, he prescribed me with very low level bio-identical hormone therapy cream (apply cream to upper arms). He retested my T level 90 days later and the level shot through the roof so he had me stop the therapy ASAP due to prostate cancer concerns etc. I think my T level naturally recovered and the added T cream sent me over safe normal levels.

One thing I’ve just been made aware of is that I have a TMJ condition based on a sinus CT scan. I believe this because my jaw hasn't been normal since getting this viral infection. Jaw pain was a major problem at the onset of the “infection” as my jaw was actually locked for a few days and all my teeth hurt like no other time before. I actually saw my dentist with concerns that my teeth felt like they were all decayed (I haven’t had a cavity since 4th grade!). This “infection” was the worst I've ever had or ever heard of. To date, not one Dr can tell which virus caused this. I also had a huge cold sore inside my mouth that lasted at least 5 weeks. It made my tongue white as snow. I have a consult appt with a TMJ specialist tomorrow to investigate this TMJ possibility. Based on what I can search online, TMJ can indeed cause ET dysfunction and many other ear issues.

Regarding fluid in the ears, I never had fluid in the ears but only pressure. I was told that my ear fullness was due to inflammation caused by viral Labyrinthitis; thus, the need for oral and nasal steroids. Autophony is certainly a top symptom of PET as is ear ringing, dizziness , ear popping , and ear fullness.

 
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Old 10-04-2013, 03:57 PM   #13
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Re: Patulous Eustachian Tube Dysfunction Help Please

Are you having any other symptoms of a patulous eustachian? I'm having the same symptoms your having but my ent says I don't have that. I don't know if I believe him. How can I know if I have been accurately diagnosed?

 
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Old 10-04-2013, 04:38 PM   #14
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Re: Patulous Eustachian Tube Dysfunction Help Please

My problem started with an ear infection and the fluid wouldn't go away. Right now my ear feels full and I feel like I've lost half my hearing ability. I don't have autophony so I can't do the head down test to see if that helps with it. I'm having alittle bit of pain right under my earlobe. I'm trying to figure out what is wrong with me. I'm not sure that I trust these doctors. I really think that my ear is filled back up with fluid. He says that a hearing test will tell if I have fluid re-accumulation. Judging from the way I feel I would have to say that I do have fluid again and if I don't then there is something else wrong. I think the ent should have put a tube in my ear instead of just doing a myringotomy. Because if my eustachian tube is blocked then I would think that my ear would just fill beck up with fluid. Myringotomy is good for pressure problems but I don't think it's done without a tube being placed very often. Just my luck that I would get a doctor like this. The first one I went to wouldn't even consider draining my ear for me. I just don't trust them. You can probably relate to this as well. I even went to the ER and had my ears looked at before going to the ent and having my ear drained. The ER doctor said my ears looked good. Just like they did with you. How is your hearing with a patulous eustachian tube? I've been told that a feeling of pressure is also a symptom of fluid in the ear and eustachian tube blockage. So the symptoms are the same. So how is one to know which they have? I want to find out for sure because if I have a blocked tube I want to look into the dilation surgery. I certainly don't want to have a tube in my ear the rest of my life or have fluid in my ear making me half deaf. Repeated tube insertion causes scar tissue on the eardrum and greatly reduces hearing. I don't know what is worse, and open eustachian or a blocked one. Have you gotten an appointment with Dr. Poe yet?

 
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Old 10-05-2013, 12:23 PM   #15
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Re: Patulous Eustachian Tube Dysfunction Help Please

I have all the symptoms of PET. I’ve had three different ENTs look at my ETs via an endoscope (with external camera for my viewing) and all three state while PET is not very obvious, they do see that both ETs have wider than normal openings. Also, my ear drums do “suck in” a little if I inhale through one nostril while pinching the other. Has your doctor performed an endoscope on you? Has your doctor viewed your ear drums suck-in while inhaling in one nostril and pinching the opposite? How does your doctor know you don’t have PET?


Like you, it all started with some sort of ear infection. Most doctors believe is was viral Labyrinthitis but a couple believe I had a case of viral meningitis given the amount of neck/shoulder/ dental pain. I’ve been searching high and low for a diagnosis. Most of the doctors I’ve seen state that the virus “damaged” my ETs and its going to take time to heal and/or for brain compensation to occur. I contend they are wrong as I should have healed/compensated by now. To date, I kid you not, I consulted with 9 ENTs, 4 Oto-Neurologists, 1 acupuncturist, 2 allergists, 1 general doctor, 2 ER visits, 1 psychologist, and 1 oral surgeon over the last 18 months. Before all this, I saw my family general doctor once per year for a physical and that’s it. So, I completely understand your frustration…. its damn maddening.

I consulted with Dr Weeks in San Diego Ca for the ET dilation tube procedure and he was more than willing to “give it a try” but was not confident that it would work for my case. I opted not to pursue this procedure in fear that if I do have a semi PET condition, dilation would only make it worse by ten times. My latest CT scan of my temporal bone showed an abnormal TMJ condition. Based on my consult with an oral surgeon this last Thursday, he believes that my TMJ is significant enough to be causing my ear and balance problems. So, I’ve been researching TMJ and I’ve concluded that perhaps this is my main issue and not viral damage. Have you considered TMJ? Does your jaw pop/click, mine does now. I think the stress of the initial viral infection caused me to clinch my teeth at night to a point of impacting my trigeminal nerve which can affect ear functionality.

Regarding dr Poe- I was finally contacted yesterday by his office that he will see me. I’m now working on a schedule that allows me to explore the TMJ theory before pursuing PET surgery with Dr Poe.

Hang in there and don't give up!

Last edited by Administrator; 10-05-2013 at 03:18 PM.

 
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