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Old 04-05-2012, 08:10 AM   #1
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Eustachian Tube Dilation Surgery

I have only been suffering with ETD for a month, but it has been very miserable. I have Meniere's Disease, but my ENT is saying this is not the fullness that can come from Meniere's. My symptoms all started with a simple cold and trying to clear my ears by pinching my nose and blowing.

In desperation I had a PE tube placed about two weeks ago. It increased the pressure by 1000% . I had the tube removed two days later. Now I have incredible sound sensitivity to almost all sounds. Even the sound of running water causes extreme pain. I have had tinnitus for many years, but it is greatly increased.

I am wondering if there are any other doctors in the US who are performing surgery to dilate the eustachian tube? I have called the office of Dr. Poe, but he is booking into October.

Thank you for any advice that can be offered!!!

 
Old 04-05-2012, 08:37 AM   #2
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Re: Need some advice on Eustachian tube dysfunction.

Quote:
Originally Posted by LoopyLuci View Post
I have only been suffering with ETD for a month, but it has been very miserable. I have Meniere's Disease, but my ENT is saying this is not the fullness that can come from Meniere's. My symptoms all started with a simple cold and trying to clear my ears by pinching my nose and blowing.

In desperation I had a PE tube placed about two weeks ago. It increased the pressure by 1000% . I had the tube removed two days later. Now I have incredible sound sensitivity to almost all sounds. Even the sound of running water causes extreme pain. I have had tinnitus for many years, but it is greatly increased.

I am wondering if there are any other doctors in the US who are performing surgery to dilate the eustachian tube? I have called the office of Dr. Poe, but he is booking into October.
Loopy Lucy,
So sorry to hear u r having problems. I had my e tube dilation done in San Diego from dr Brian weeks. If u scroll to the bottom of the page, there is a video of my surgery. I only know for sure of dr weeks and dr poe, tho I heard of possibly another dr in the ny area. I can find out for u, I believe I have it written somewhere. Dr weeks is amazing, all around. I had to fly to see him a few times, but it was worth it. I didnt have to wait very long to get an appt. I was in so much pain..for me, it worked instantly, like my head had been popped open. Good luck and let me know if I can help with anything else.
Thank you for any advice that can be offered!!!

 
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Old 04-05-2012, 11:04 AM   #3
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Re: Need some advice on Eustachian tube dysfunction.

DLT,

Thank you so much for the information!!

I have already called and he is actually booking in May!! That is a welcomed relief than October. ( Now I need to figure out how I could manage to fly with the tube being so messed up)

I am wondering if you experienced similar symptoms?

Did you ever try PE tubes? If so, were they helpful?

I have noticed that being in a somewhat noisy environment will make the ear feel even more full and reduce my hearing to basically nothing in that ear. Something as simple as taking a shower will increase fullness and ringing for several hours afterwards.

Sound sensitivity is off the charts......

I have done all of the usual meds. Prednisone, nasal sprays, Sudafed and the list goes on. Sudafed in the past was always my weapon of choice when my ears acted up and worked like a charm.

When this first started I could apply warm moist heat and get the ear to open. Oddly enough getting on the treadmill worked well too. Now nothing at all can make it budge.

The pressure is so intense that it is hard to describe to someone unless they have been there.

Eating is a chore currently, and any crunchy foods sounds like I am chewing rocks.

I currently have a paper patch over the hole in my eardrum from the PE tube being removed. I am not sure if that is helping or making the situation worse.

How long does Dr. Weeks think that the tube should stay open after surgery?

Sorry to bombard you with tons of questions.

Thank you again for your help!!

 
Old 04-05-2012, 02:22 PM   #4
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Re: Need some advice on Eustachian tube dysfunction.

I'm excited for your appt. No I never got tubes. Every ENT I saw said they wouldn't help. My problem flying was I couldn't pop my ears. I live in high altitude so I am used to driving thru the canyons and having my ears pop. They would never pop. Swollen and stuck shut. If u saw the surgery video, it makes sense that if that little tube is closed, or even open all the time, then there r lots of problems that can occur. There r no real long term studies yet on how long it lasts, but dr weeks seems to think is permanent. But to be honest, if I had to have it done periodically, it's NO big deal. Mine took 20 min, and I couldnt even tell he had been in my head. No pain, nothing. It's worth the relief that I got. I keep in touch with others that have had it done, or who r going to, to see how they r doing. Being that u have only had problems for a month, he may try other treatments first. Have u used a nebulizer? I ve heard of some having luck with it. I didn't. Mine had been almost 4 yrs shut. The pain and noises were unbearable, so I understand!!! No one gets it, until they experience it. That's why this forum is so great, to not just vent, which is nice, but to get some good info. Keep in touch!

 
Old 04-05-2012, 04:12 PM   #5
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Re: Need some advice on Eustachian tube dysfunction.

I can't even begin to imagine 4 years!! My heart goes out to you and I have much respect that you were able to endure this for that long.

Can you direct me to some info on using a nebulizer for ETD? I already own one so that might be something worth trying to run by my current ENT.

Thanks!

 
Old 04-05-2012, 06:04 PM   #6
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Re: Need some advice on Eustachian tube dysfunction.

Thank u, I can't say it's been easy, but I am glad I was persistent and didn't accept what most drs said, that I just had to learn to deal with the pain. That's why I loved dr weeks from day one. He wasn't going to quit on me until I was better. And he didn't. He has been a true friend to both he and my husband. I would ask your ENT and maybe try it before u see dr weeks, because that's what he tried on me first. I know u need a prescription for the meds. I believe they use a steroid type med for the inflammation. I remember using two diff kinds. He also had me buy the ear popper it did help alot with the pain behind my nose, but didn't pop my ears. Im not surprised if your drs haven't tried either of these yet. It took my 7th ENT to even get to nebulizing, which seemed very routine for him. I am in contact with another woman with tinnitus and ETD and nebulizing has helped her. Good luck!

 
Old 04-05-2012, 06:51 PM   #7
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Re: Need some advice on Eustachian tube dysfunction.

Hello asj7,

I have been reading your thread about using the nebulizer for relief from ETD. I was wondering if you could share what combination of meds you were prescribed to use in the nebulizer? I live in TN and noticed you are in NC. My current ENT has indicated that the PE tube, oral steroids and nasal spray was all that could be done. From reading a bunch on this board I know there are still options left out there to try. ( The PE tube didn't work for me and had to be removed) I am hopeful that if I could bring in the specific meds to be used in the nebulizer that maybe my ENT would be willing to give it a try.

 
Old 04-05-2012, 09:21 PM   #8
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Re: Need some advice on Eustachian tube dysfunction.

Quote:
Originally Posted by LoopyLuci View Post
Hello asj7,

I have been reading your thread about using the nebulizer for relief from ETD. I was wondering if you could share what combination of meds you were prescribed to use in the nebulizer? I live in TN and noticed you are in NC. My current ENT has indicated that the PE tube, oral steroids and nasal spray was all that could be done. From reading a bunch on this board I know there are still options left out there to try. ( The PE tube didn't work for me and had to be removed) I am hopeful that if I could bring in the specific meds to be used in the nebulizer that maybe my ENT would be willing to give it a try.
Asj7 is the woman I am talking about, she should be able to answer alot of your questions!!

 
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Old 04-07-2012, 10:14 AM   #9
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Re: Need some advice on Eustachian tube dysfunction.

Hoping someone can tell me if this is something they have experienced with eustachian tube dysfunction...

My ear drum is constantly popping, not the eustachian tube as this does not relieve any of the pressure. It is quite loud and is doing it very frequently. At times I do feel I can hear a * tiny* bit better after it makes the popping sound. This is also the ear that I had a PE tube removed from two weeks ago.

I had an upper cervical adjustment on my C-2 on Friday in hopes that this might help with some of my symptoms. I am thinking this probably ties back to the adjustment. Not sure if this is a good sign or not just yet.

Just wanted to see if anyone else has had similar symptoms.

Thanks!!

 
Old 04-07-2012, 10:30 AM   #10
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Eustachian Tube Dilation Surgery

I am trying to find out if there are any doctors doing this surgery who might be closer to where I live. ( Tennessee)

I am aware of Dr. Weeks in San Diego as well as Dr. Poe in Boston.

We are certainly willing to travel, but I am really concerned about what my ears would while flying.

Thank you!!

 
Old 04-07-2012, 10:47 AM   #11
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Re: Need some advice on Eustachian tube dysfunction.

Hi LL,

I am recovering from ETD and have bilateral PE tubes. My ears pop a lot more now than they ever did before I developed problems. I read in rat studies that it took 6 months for the middle ear mucosa to recover after ETD and middle ear infection. Apparently it can take the human ear even longer than that.

I am flying home from my consultation with Dr. Poe (excellent doctor, incisive and able to quickly yet thoroughly evaluate my issues and come up with a treatment plan). Long story short: my e-tubes themselves are NOT the underlying cause of my woes. My issues are, as I have long suspected, muscular spasm combined with underlying allergies I have developed to the area of the US I moved 7 years ago. It's no wonder getting weekly allergy shots has given me many more clear days than before! And here in Boston, my ears have felt almost normal, presumably because the allergy load has been lifted and I'm not under daily stress (vacation, no work, no kids!). Even the random popping and myoclonus has calmed down considerably.

I'll write much more soon when I'm back home and settled. No matter what's causing our ETD, I believe with proper guidance and treatment we can all find relief from the suffering.

 
Old 04-07-2012, 11:54 AM   #12
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Re: Need some advice on Eustachian tube dysfunction.

Jenni,

I am happy to get a report in from your visit to Dr. Poe. I hope you have a safe trip home and were able to a treatment plan that will relieve your symptoms!!

I live in TN, but am already an established patient in the MGH system. I had a brain tumor removed in 2000 by a neurosurgeon at MGH. I had excellent care and made a full recovery. My tumor was basically considered inoperable by several different neurosurgeons in our area. I have a great deal of respect for the doctors at MGH. The level of care at MGH is amazing!!

I sure hope we can all have a quicker recovery than the rat models.

 
Old 04-08-2012, 01:05 PM   #13
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Re: Need some advice on Eustachian tube dysfunction.

Question for Jenni and DLT48,

On the ear popper did you purchase the home version? By looking at the website it looks like they sell two different ones. One looks like it is used by doctors in office, not really sure. Amazon sells the home version, and it looks like it doesn't require a prescription. That is where I am confused. Just wanted to get your input before making a purchase.

Thank you for your help!!

 
Old 04-08-2012, 08:33 PM   #14
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Re: Need some advice on Eustachian tube dysfunction.

Hi! I'm sure the one I bought was the home version. It's the one sold over-the-counter in drugstores in Canada. My husband brought it home from a business trip as a gift! (Ah, the romance of ETD, lol.) It definitely helped me over the hump during the really hard times when my ears would plug for hours at a time. Unfortunately it doesn't appear to be a cure in itself, or it wasn't one for me.

I will be writing up my Boston trip report soon. Have family in town until Weds, so probably soon after that. Had some really bad ear ringing last night after landing, but it seems to have calmed down considerably (though still softly ringing today). I had no ringing ears at all in Boston...it was amazing!

 
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Old 04-10-2012, 07:29 PM   #15
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Re: Need some advice on Eustachian tube dysfunction.

Just got through trying it.... Nothing.... Tried it on both speeds, but nothing happened. The sinus feels pretty clear on that side though. : ) I was really hoping that this would be the one thing that would pop that tube wide open again, even if just for a small amount of time. Feeling a bit bummed at the moment.

Prior to having the PE tube inserted I could apply moist heat and wiggle the jaw and get a few minutes of relief. After having the tube placed and removed that hasn't happened. Have had some weird loud ear drum popping sounds, but no release of pressure. Even with the tube out I still have more pressure than when I started. I have so much regret over having done the tube. It was where things took a really ugly turn and put me in the land of almost not being able to function at all. My hearing also took a huge dip in that ear at the same time.

Did either of you experience terrible sound sensitivity? Not just to loud noises, but to normal life noise. Running water, dishes , papers rustling and other weird junk too. I think that is the main thing that is turning me into a hermit right now. I was still trying to do life as normal, but this on top of everything has stopped me in my tracks. I have an amazing supportive family or I could have done it even this long with out them.

The thing I keep trying to determine in my case is if this is truly an e tube problem or the next phase of Meniere's disease for me. While Meniere's can certainly cause fullness I have never experienced it before. I am bilateral and have had it for 15 years. I have, however always had to work to keep my etubes open when sick or traveling. The Valsalva trick is what I have always used. I swallow and can actually hear the tubes sticking together at times. Lots of crunching/ crackling noise too. Of course I am trying to open the tubes almost constantly.

Both of you have been so kind to answer my zillion questions. It is reassuring to be able to communicate with others who get it.

 
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