Posted , 4 users are following.
I had Eustachian Tube Balloon Dilation surgery in 2017, and it was the worse decision of my life!!! I want to apologize for the length of this post, but I feel it’s important for you to know my exact history and situation.
After Eustachian Tube Balloon Dilation surgery, I have a constant crackle/popping/clicking/suction sound in my ears every time I swallow, yawn, chew, and drink. It’s not just here and there, it’s EVERY time I activate those muscles. I NEVER had this issue before. I was told the symptoms would go away with time, but they haven’t. It’s been over a year and my doctor has tried everything including steroid nasal sprays, tube placements twice in the past year, and a full-blown middle ear exploration surgery to find the source of the crackle. They all have failed. Valsalva maneuvers also don’t work. My doctor told me I might just be stuck with the symptoms. I am a 33 year old healthy male who is slightly overweight.
I have scoured the internet over and over again and I cannot seem to find anyone with similar symptoms as me. I see one of the nation’s best doctors and he is struggling to find the answer to my problem. I am sharing my full story with everyone out in the world in hopes that out of the billions of people, there must be at least 1 person who has/had the same exact symptoms as me and found relief. I hope you take time to read my story, and I hope there is someone who reaches out that can help.
Let me provide a quick rundown of my ear history. I was born 80% deaf in my right ear. Luckily, my other ear (left ear) has normal hearing, but I had drainage and pressure issues in both ears with lots of ear infections as a kid and I had tubes done 3 times. Since then, I have had constant problems with my right ear (80% deaf ear) that I will briefly describe now. I will reference my right ear as the “bad” ear and the following is all about this ear. In 2012, I had an infection that was spreading to my brain. I was sick with a fever for 3 weeks and hospitalized for several days because of the infection. After an ENT visited me in the hospital, he discovered that I had a cholesteatoma cyst growing inside my middle ear that was causing the infection. I was referred immediately to one of the best surgeons in the area, and we removed the cholesteatoma in surgery and my middle ear was completely gutted and cleaned. A year later after the ear fully healed, I had reconstructive surgery and had a prosthesis ear drum implanted. A year after that, signs that the infection from the cholesteatoma was coming back so we did another surgery to clean up the infection. There were complications from that 3rd surgery and I had a constant buzz in my ear from the prosthesis after wards, so we did a 4th surgery to swap out the old prosthesis for an upgraded titanium prosthesis.
Before that 4th surgery I was constantly complaining to my doctor that my left ear (which is my normal ear) was causing me a lot of pain when I travel and fly for work. I had tubes put in that ear on many occasions in the office prior years following, with no resolution. My doctor recommended a new surgery that helps relieve Eustachian Tube Dysfunction, Eustachian Tube Balloon Dilation. He recommended we go ahead and do the tube dilation on both ears during my 4th surgery when he was working on swapping out the prosthesis in my bad ear.
This was the worse decision of my life! After the 4 surgeries on my bad ear, I finally had that ear back to normal again, and then for the FIRST TIME IN MY LIFE, problems started in my good ear. Besides pains when flying, I never had an issue with my left ear before! It’s not pain, or discomfort, or complications with my hearing; it’s just a constant crackle/popping/clicking/suction in my left ear every time I swallow, yawn, chew, and drink. My bad ear does it too, but only at night when I am laying down. When I am in bed and my muscles are more relaxed, it is much louder and uncomfortable, and both ears do it. But during the day, it is EVERY time I swallow in my left ear. it’s not here or there, it’s EVERY time. My right ear does come and go during the day also, but my left ear is driving me mad. It’s so loud and noticeable that even over a year later, my brain has not been able to shut it off. I hear it in my sleep, I wake up constantly and pace the halls of my house trying to put my mind at ease, so I can go back to sleep. It’s effecting my work because I constantly have to walk away from my desk to forget about it. I am constantly shaking my head and yelling and trying to blow air through my ears hoping for relief. I have dreams of having dementia and mental disorders that I never had before. I have the thought of constantly wanting to stick something long through my ear. It’s all I think about and it truly is changing and damaging my way of life. My wife is really starting to worry about my well-being. And truthfully, so am I. This isn’t just a crackle, it’s like a suction crackle with a sequence of several clicks and pops. My doctor says that my ear is now doing what it’s supposed to and since I haven’t felt this my whole life, I’m just not used to it. I’m sorry but if this is normal, I don’t know how any of us can manage. I always think about how my ear was before the balloon dilation and all the years the crackle wasn’t there, and I wish so badly I could just go back to how that was. I wish I never did the surgery. I am constantly asking myself, will I be able to manage this for the rest of my life, and the thought of having to put up with this another 30+ years just drives me crazy.
My doctor and I tried to fix the crackling since the balloon dilation surgery, but we’ve been unsuccessful. Immediately after the 4th surgery (aka = dilation surgery), I complained to my doctor that I had a constant popping sound in my left ear that I’ve never had before, and he told me it is common after this type of surgery and it should go away in time. The first few months were rough. I got ZERO relief and had trouble sleeping while my brain adjusted to this new sound and uncomfortable sensation. 3 months went by and there wasn’t a single time the crackle wasn’t there when I swallowed. I began to get very worried the crackle is permanent, and at my 3-month post-op checkup, I tell my doctor about it. He prescribed me nasal steroids to see if a fluid is trapped in my eustachian tube to help clean it up. I used them religiously for 3 months and even though I had some sort of relief (that or my brain was slightly adjusting) the crackle in my ear was still constant and I told him this at my 6-month checkup. He put a tube in my crackle ear in my office to see if relieving pressure would work, and it didn’t change a thing. At my 9-month checkup, you could tell my doctor was really starting to worry. He told me he had a meeting coming up in October 2018 with the 4 other surgeons in the USA who do the balloon dilation surgery, and he wanted to present my case to them to see if they have any suggestions. He personally called me after that meeting a month later and explained that they discussed my case and recommend we do a middle ear exploration surgery to see if the issue can be found. I was very skeptical about doing this because my left ear has never been touched before (except the eustachian tubes and tubes in my ear drum) and it was the only good ear I have so I didn’t want to open up a whole new can of worms and possibly damage hearing in that ear. After debating it for a couple months, my wife and I finally decided that since I wasn’t getting any relief from the crackles anyways, we might as well do the surgery.
I prayed and prayed that when I woke up from the surgery the crackling would be gone. When I opened my eyes in recovery, I slowly closed them back down, took a deep breath, whispered to myself, “please, please, please,” and then took a deep swallow. The crackling… was still there. My heart sank and I was immediately in mental agony. The doctor came in and said he did find some scar bands and other tissue that could have been rubbing against my ear drum causing the sounds. Unfortunately, while I laid in recovery, it was still the same as before. When I was standing and walking again, and I left the hospital, I did notice some relief that I’ve never felt before! On the mercies of god, during that day the relief got better and better and the crackling was eventually gone! Like completely gone! For the first time since the balloon dilation surgery, the left ear had NO CRACKLING! It was the greatest feeling in the world!
The relief, however, was short lived. During the next 4 days, the crackling would come back during random times, especially while laying down. Luckily, it would only last for a little bit and the crackling would go away. I thought, if it’s just for a short period of time each day, I can manage that! But every day, the crackling would come back longer and stronger. 5 days after the surgery, I seen my doctor to have all the packing from the surgery removed. Once the packing was removed, I could instantly hear better, but I noticed the crackling was there, but very faint. Well, since the packing was removed, the crackling has been constant again, just as before! That week was probably the hardest for me mentally. For 4 days I thought the problem was gone (my brain got a taste of what it is like again without constant crackles and pops in my ears) and the fact that the crackle was back and nothing I did got rid of it, really made it hard to cope with. I had several anxiety attacks and couldn’t sleep. I had to retrain my brain to shut this sound off. I performed several Valsalva maneuvers to help, and there were certain times I actually got relief in my left ear where the crackling would go away, but it would immediately come back. The Valsalva maneuver actually never helped with my left ear before, so the fact I was getting at least some temporary relief when I was performing it was a good sign. However, now a month after the surgery, Valsalva maneuver’s don’t work just like they didn’t before, and the crackling is almost identical as before, with one exception; there a couple swallows a day where the crackle isn’t there. I’m talking like maybe 5 in the whole day. Before it was 100% of the time, now it’s 99% of the time. A step in the right direction, but not nearly enough relief for it to be manageable. On another bad note, I am noticing weird feelings in my bad ear (the other ear that had 4 surgeries) that I never felt before, and now I have a very constant, but very faint, ringing in my good ear (but I’m hoping that goes away in time since I just had surgery a month ago). On a positive note, my left ear has no pain when riding the high-rise elevator to my work office everyday like it did before the last surgery, so that’s good at least.
I mentioned to my doctor that I would like a 2nd opinion, but he is skeptical that I will find any doctors in the country who is as experienced and knowledgeable as he is. It’s a pompous thing for him to say, but it’s true. I told him my theory. I think my Eustachian tubes have been so used to being closed shut my whole life, that we disrupted them when we did the balloon dilation. The dilation opened them up, but only a little and now I have the crackles because my Eustachian tubes want to stay shut but for the first time in my life they are actually trying to open. I feel like another Eustachian tube dilation surgery would help because it would open them up even more and really get them to where they should be, but he is concerned that if we do that, we will open them up too much which causes other serious problems that he wants to avoid. His theory is over time my tubes will settle and the crackling will disappear or I may just be stuck with the symptoms consequently for opening up the eustachian tubes.
I feel like there just has to be someone out there with the same symptoms as me, who possible has found relief or a solution.
Thank you for taking your time to read this.
0 likes, 8 replies