I'd also like to hear more about it. I'm considering this surgery myself, but I live in the UK and it's not done here. Shadio, where are you getting it done? I am willing to travel (and possibly to pay private fees -- this will depend!!) but I need to research locations.
I got my eustacian tube dilation surgery done by Dr. Brian Weeks about a year ago. Each month after the surgery, my symptoms lessened little by little. I recommend doing the surgery with Dr. Weeks if he thinks it will help you as he is an amazing person and physician. I am happy I did it...it just took a long time for my symptoms to go away. I still have a little bit of ringing in my head and some clicking and popping, but overall I am way better than I was before the surgery!
Hello Everybody. I have read up on the ET Dilation Surgery and i am also interested in doing this surgery. It's 5 months now since i have been diagnosed with ETD. Two weeks ago i had a grommet fitted in my right ear.
I have not noticed a difference yet. Gonna wait it out. I have crackling, popping of the ear when i swallow. Constant pressure which can drive me nuts. I want to see dr brian weeks for the surgery. Only thing is i am afraid to get into an airplane with this ETD.
@shadio: Did you fly out to san diego Cali? I would have to take three flights to get from where i am (South America) to San diego Cali. I am a bit worried about that it will be a bit to much pressure for my ears.
Looking forward to your reply. Thanks
@Sonja1975-I live about an hour and a half drive from San Diego so I drove to see him. I lucked out on living so close to someone that performs the surgery. I would be scared to get on multiple flights too with that kind of pressure in your ear, but if there are no other options you may want to think about it. I would think the grommet would relieve some of the pressure, no? Good luck and let me know if you have any further questions.
Sonja - I too had no relief from my grommets. The doctors told me I'd feel relief right away, but I knew something was wrong from the beginning. I continued to have a feeling of fullness and swelling in my ears, continued to suffer from tinnitus... plus, I developed autophonia - a hyperperception of my own voice, and also my heartbeat and breathing. It was worse than before I had the grommets in, so I had them taken out.
Re flying.... I fly often, as my family all live in different parts of the world, and I haven't had a problem. In fact, on some flights my ETD actually improves, and I get a bit of relief! But I can't say that will be the case for everyone. Can you test it somehow? Take one short flight somewhere before scheduling three flights to San Diego?
The other thing I can suggest is that you contact Dr Weeks and discuss whether he can make an assessment about your suitability for the surgery based on your medical records. I have contacted a doctor in Boston about this procedure, and he asked me to fax my records from the UK. I haven't done it yet as in the UK it is a cumbersome procedure to get copies of my records... but eventually I should be able to get an assessment without making a (possibly unnecessary) trip to Boston.
Hi, thanks for the replies. I immediately felt relieve the moment my ENT cut my eardrum. The first three days all was great. But then the pressure started returning on/off. Tomorrow will be two weeks since having the grommet in my right ear. I had planned a vacation to Aruba which is a 2,5 hour flight from were i am. But i just don't know. I always develop a cold when i am out of country. Might be the change of climate or it might be my immume system. I feel like the cold starts as soon as i land and is over the next day. But you never know. All of this started when i developed a cold during my last vacation in NYC (Nov 2013). It probably was still in my system when i had to fly back to my country.
@Meira: I am gonna contact dr weeks his office and see what they say. I have already downloaded the patient form from his website. You are talking about dr poe in Boston? Are you going to him for the autophonia? Do you still have autophonia?How are your ears now?
@shadio: My ENT told me that with the grommet in. I can fly without pain. I still would have to clear my left ear (where i don't have a grommet) during decent. I always had pain in the ears during decent. Then i would just do the valsalva manouvre a couple of times untill the plane landed. Great for you living that close to Dr weeks his practise. Hope to hear more of your progress here.
@Sonja - Yes, it's Dr Poe in Boston. I got his name from Dr Weeks, actually. I contacted his office and explained that San Diego was a bit far for me, and asked him if he could recommend anyone on the East coast. Do you know Dr Poe or know anything about him?
I'm hoping that he'll say the dilitation procedure will help my E-tube dysfunction and tinnitus. I don't suffer from autophonia in the same way anymore (that ended when they took my grommets out). With the grommets I had been hearing my own heartbeat and breathing -- a very weird sensation!! Now that's back to normal, but I still can't have normal conversations with other people, because my own voice still sounds very funny to me. It's as though there's a filter between me and the outside world. My hearing is officially fine (according to the tests), but it doesn't feel fine. My ears feel like they're filled with cotton. And I know that they're producing the gluey substance associated with E tube dysfunction ("glue ear") because I feel it dripping, and it also has a very distinctive and unpleasant odor.
@meira: yes I have heard and read about Dr Poe. He has helped many with PET. Many people have traveled from far to go see Dr Poe. He also helps with ETD by doing the Eustachian tube dilation. I have also considered going to Dr Poe in Boston. From here to Boston are two Flights. So closer than San Diego Cali. But Dr Poe has a long waiting list. As Dr weeks has not such a long list. Furthermore I have family in Cali. Which is always welcome. Don't know Boston. So we will have to see.
How long have you been diagnosed with ETD?
I have not experienced Glue Air. Or any from of fluid. Nothing has come out of the whole in my ear drum.
Last edited by moderator2; 04-03-2014 at 02:45 PM.
I've suffered from ETD for about ten years (!!), but I've only been diagnosed for the past two or three years. I put off investigating my ear problems for a long time because the problems were intermittent at first and I was dealing with another, worse problem (terrible facial pain that was eventually diagnosed as migraines).
It's been a slow process for me, partly because I tend to put off dealing with my own health (yes, I am partly to blame) and partly because I now live in the UK and have been relying on the NHS, which is extremely slow and cumbersome. Each stage in the process can take months. The last time I saw my ENT I waited more than two months for an appointment - only to be told that they couldn't do anything for me, that I had reached the limit of what the UK health system has to offer. (You folks in the US who favor a single-payer system -- take note!)
My tinnitus takes many forms, from a high-pitched whine to a low-pitched hiss, usually both simultaneously. It's been a long time since I've experienced real silence. Often I can't tell whether a sound I'm hearing is my tinnitus or something in the real world (like an electrical hum).
Hello Meira you have had ETD for a long time! I have had ETD for 5 months now. I can't remember a normal feeling in my right ear. OMG. Do you have ETD in both ears? And for you it's mostly the cotton woll feeling and tinnitus!
For me it started with a LOT of pain. It kept me a wake at night and i was feeling very naseaus. I think because my anxiety level was getting high, the longer the pain lasted. With the pain my jaw started to hurt and then the popping and crackling started. Every time i swallow and open my mouth. I have seen three ENTs in the last 5 months. The third ENT told me that the popping and crackling when i swallow is a good sign that my ET's work. And because of the fact that my hearing is very good (100% hearing according to all the tests) i can hear the ET's crackle and pop when i swallow. It has always been there. I don't know what to make of that story because when i did not have ETD my ET's never made a no noise when i swallowed or opened my mouth.
I think in January of this year the pain calmed down. Still have Pressure and the crackling. It has not been intermittent at all. I am Constantly am aware of the pressure. Did you experience any pain or pressure in the ears?
Here in Suriname you can get in to see an ENT after maybe max two weeks. Not longer. Because of the pain i could see my first ENT within two days. He gave me steroid nasal spray which i am still on. I saw my ENT yesterday and he now gave a short course of oral steroids. Dexametasone. As my ET is inflammed, he wants to see if the Dexametasone will do anything. Have you ever been on oral steroids for your ETD?
Sometimes i drink a sudafed or an anti histamine (Zyrtec).
I have noticed that my right nostril is stuffy. Can't breathe as smooth through it as my left nostril. All of the ENTs looked inside my right nostril and they said it was all fine. No swollen membranes nothing. I just don't know
I will certainly also check in with Dr poe. I have to get a hold of all my records. I have a copy of all my tests. I had a CT scan done with contrast fluid, Bloodwork, an Ultra Sound, Tampanograms and that's about it. Am i missing smth?
The tampanograms have always showed that my ET's where working good and are able to equalize pressure. Which of course does not make sense!
I have read on numerous websites about ETD, that a tampanogram may have as result that your ET's work good but that is not entirely true. At That moment your ET maybe be closed and perfectly fine. But it is partly blocked and won't open fully. That gives problems and no tampanogram is going to be able to read that. If it is entirely blocked than a tampanogram may be able to give a good reading about the equalization of the pressure.
Sonja, it sounds like your problem is complicated, whatever it is! I hope one of the specialists in the States can help you.
To answer your question - I do occasionally experience pain and pressure in the ears. I have had a couple of ear infections but sometimes the pain doesn't seem to be related to anything.
I bet in another 10 years the specialists will understand a lot more. I wish were were there now!!