Eustachian Tube Balloon Dilation

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I have been experiencing Eustachian tube dysfunction starting about 4 years ago. Over the last 8 months it has been non-stop with ear closing off, crackling, popping, clicking when I swallow, pressure and tinnitus. I live on the wast coast of US in Seattle and have been to 2 GP, 5 ENT, 2 Allergists, Gastroentologist, Naturopathic doctor, 2 chiropractors, @ opthamologists (for allergic conjuctivitis they thought was related to the ETD but ENT's said no) and 2 massage therapists and nothing has worked. I have tried the usual steroid nasal spray, decongestants, antihistamines, prilosec (when they thought it was caused by GERD), several 30 day doses of antibiotics, prednisone, eliminating dairy products, etc. In reading about the new Acclarent product AERA which was approved in Sept 2016 it seems this offers a possible solution. I was looking for input :

1. Has anyone had this and care to share their results?

2. What is the best clinic or doctor on the west coast to see regarding ETD solution including the balloon dilation?

I am getting desperate and have run out of alternatives and no doctor can help me. I hope someone here can give me advice. Thank you!!

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  • Posted

    Hi Mike.  Sorry you are suffering with ETD.  The balloon dilation has been being done for yrs, it was just FDA approved.  I was one of the first to have this surgery, about 5 yrs ago, and it opened up my tubes.  I've heard a lot of other success stories over the yrs.  I'm assuming we will see more surgeries now that it has been approved and more ins companies are willing to pay.  I went to Dr. Brian Weeks, in San Diego.  He is one of the pioneers of this procedure, and just a great person and caring dr.  Hope this info helps you!  Good luck and try to stay positive!

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    • Posted

      Thank you Diane for sharing that experience. Dr Weeks is one of 6 I have identified based on being experienced. Since I will need to travel from Seattle to San Diego, was his team easy to work with in setting up an appointment? Did you start with a phone consultation or fly in for your first appointment?

      It appears the reason for the success of this procedure is attributed by most to the facts it opens the tube and makes it easier to start functioning properly.Anything to get rid of the constant clicking when I swallow and the feeling of being under water would be so great.

      Again, thank you for taking the time to share.

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    • Posted

      Mike,

      Can you let me know the 6 doctors you have identified? I have only found Poe and Weeks and would like to evaluate all options.

      Thank you,

      Sam

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    • Posted

      Mike: I'm in the same boat. Can you PM me too with your list of 6 docs. I did talk to the Acclarent rep, and there are docs near me that have JUST been trained on the tuboplasty method, I would rather go with someone who has been doing it for a while, given that huge site-to-site variation in success rates shown in the final clinical trial before FDA approval. Success rates ranged from 92% to 0%, I want to go to the 92% place, but they will not break the code on their clinical trial participants! Thanks!

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    • Posted

      HI Mike. Would you mind sending me the named of the Dr's you say the do the ballom dilation in the eustachian?. I live in Georgia and I would to find a closer Dr that can help me.

      Thanks.

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    • Posted

      Could you give me the names of the 6 doctors as well? I have recently been diagnosed with ETD and I'm having a really hard time with that mostly because I am claustrophobic and the ear fullness makes me panic. Any help is much appreciated!

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    • Posted

      Hi Diane-

      Did you have a tube put in before the balloon procedure? I have been suffering from this for a month, and just had a tube put in. Wondering if I should push for the balloon procedure- was there an immediate relief with that? This has been miserable, and I am incredibly anxious about this, as I already have hearing loss.

      Diane

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    • Posted

      No, i never had tubes.  Its still early for you, i know its frustrating, but i wouldn’t consider surgery yet.  Yes, i did have immediate relief. And for the next 6-8 weeks they would open & close, and make a lot of weird noises, until they finally just stayed open.  I wish you the best!!! Don’t give up yet, there is hope.

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  • Posted

    Hi Mike, reading your post was like reading my own life. I'm sorry u are suffering with this. I am in Utah, but i flew it San Diego and had the new balloon dilation surgery about 5 yrs ago, and my ears are still clear.  Maybe thats an option for you.  Good luck, i know how frustrating this condition is. Diane

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    • Posted

      I didn't realize from the post, this was the same Mike i have been talking with.  Yes, u are right, the dilation just gives the tubes a chance to start functioning properly.  Thats why after the surgery you need to be patient with them for a few weeks, until they start to work on their own.  I hope u get some relief soon!!

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    • Posted

      Thanks Diane. I made an appointment with doctor Weeks but cancelled as I think I found the solution locally. I contacted Acclarent and the local rep gave me 4 doctors trained on Eustachian tube balloon dilation. I chose one and he gave me a thorough exam and asked questions then concluded I do not have ETD but involuntary muscle spasms in the tensor tympani muscle which causes many symptoms that look like ETD. I recalled in Dec and Jan when they were bad I tried using an old prescription of xanax and my issues cleared temporarily. So his conclusion makes sense.

      Obviously I can't be on xanax for life but have started using and SSRI (lexapro) and my symptoms are getting better. My hope is it is anxiety and I can get rid of that and all returns to normal

      Thanks for your advice in case this doesn't work out and I need to look for another ENT and consider balloon dilation

       

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    • Posted

      That's great Mike.  I tried those things too, before my balloon surgery, but they didn't work for me.  I hope this is your answer!!

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    • Posted

      Thanks for letting me know your experience with those med. While I am trying to be optimistic I am also a realist in knowing so far I have tried a lot that didn't solve it so I may be heading for the ballon dilation elsewhere.

      Were you diagnosed with tensor tympani spasms or were the anxiety meds to help deal with the conditions and see if it was anxiety?

      I appreciate your insights as they are very valuable coming from someone who successfully overcame this

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    • Posted

      I was put on them at first along with an anti depressant.  Also migraine medication etc, before i was diagnosed with ETD. I was given something for anxiety to help me sleep at night also, since the noises in my head were so loud, I couldn't sleep. I wish they would have worked, so i hope they work for you.  ETD was the only thing i was diagnosed with (unless you count all the drs i saw that told me, I was crazy and it was all in my head haha).  Good luck with the meds!

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    • Posted

      Thanks for sharing that Diane. I plan to give the SSRI some time to work and see if it solves my issues. The xanax helps a lot but isonly short term because you can become addicted.ENTs and doctors to tell you your ears are fine and brush you off when you are struggling to live. If these meds don't work I will move on but am running out of options. I appreciate your advice having gone through a similar run of issues

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    • Posted

      Hi Missy

      No I did not see any of them. I made an appointment with Dr Weeks in San Diego but before I went I talked to a local ENT trained by acclarent on the eustachian tube balloon dilation. After the exam he said I did not have Eustaxhian Tube Dysfunction as the other 5 or so ENT's said but instead was having muscle spasms in the Tensor Tympanic muscle. This was causing me to have ear fullness, ear congestion and pressure. My understanding is this muscle protects your ear from loud sounds but when it spasms (which there is a rare syndrome called Tonic Tensor Tympanic Syndrome) it causes these symproms sporadically. I had taken a Xanax in December a recalled to the doctor after his diagnosis how all my symptoms settled down afterward.

      Xanax is a GABA enhancer and GABA is used to make seratonin. So I am on an SSRI Lexapro and the spasms are becoming less frequent and less severe

      I hope that answrs your question and why I did not do balloon dilation

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    • Posted

      Just one more question...

      Did you have crackling and popping when you swallow?

      Sometimes I wonder if I have those mussel spasms

      I believe TMJ can also cause them.

      I'm supposed to have the balloon dialation Friday and I'm definitely nervous about doing the procedure.

      Thanks! Missy

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    • Posted

      Hi Missy

      Yes I had crackling and popping when I swallowed most of the time. It would vary in intensity and I would have peiods where evrything was normal. I was baffled by how some days were better than others and even within a day periods would be better than others.

      I went to a NUCCA chiropractor and it seemed to alleviate some of the issue. The ENT who diagnosed me with spasms suggested an acupuncturist in additional to meds for tension and muscle relaxant. TMJ is a possibility but after seeing my dentist and a maxillofacial surgeon the tests said I didn't have TMJ although some slight bruxism

      If you do the dilation good luck. After the diagnosis of spasms the ENT said the dilation could make mine worse and did not recommend we consider it.

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    • Posted

      Hi Diane,

      I was wondering how the flight to San Diego went for you? I am considering going to see the doctor in San Diego but I am scared to fly because of the etd.

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    • Posted

      Hi Kelly, i figured i had nothing to lose, since my ears were both already plugged. It was a little more painful, especially on landing. I had no problems flying home after the surgery. Good luck 👍 

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