My two cents? At the end of the day, this really is a conversation best left between you and your ENT and your primary care physician. If those two feel pretty strongly that tubes will alleviate a lot of the persistent suffering you're enduring now, then I think it's worth a try.
The value I think you can take away from this thread is what you should be prepared for. No one ever warned me what some of the temporary side effects could be, and that probably more than anything else is probably what made it so bad -- I didn't know what to expect, so when I had all sorts of hearing problems immediately after the tube insertion, I freaked out with fear that permanent damage had been done to my hearing, etc.
In the end, the original problem that the tubes were inserted to resolve still hasn't gone away, but my hearing did fully return to normal over about 4-6 weeks. But this was just my experience. You have unique and different problems, and so who knows? The tubes may actually work. But if my experience is any evidence, even if the tubes don't alleviate your problem, everything will most likely return to normal -- just remember that it could take awhile, and the temporary symptoms can be extremely upsetting and sometimes debilitating.
I am am earlier poster to this string from several months ago.
Please assure your friend that this will get better. I myself had severe ringing in the ears after the tube insertion, muffled hearing, and no low tones. But after a couple of weeks, everything returned to normal. The underlying issues that caused my ENT to want to insert the tubes have never been resolved, but that's another issue. As it relates to the new conditions post-insertion, I promise they will resolve themselves within no more than a couple of weeks. Encourage your friend to hang in there, but if he is truly upset enough that suicide is being legitimately considered, there could be some other more serious issues at play, and you should get your friend some intervention immediately without delay. It would be better that you overreacted versus not react at all.View Thread
As I'm sure you probably already realize, everyone is different, so my experience with this could be totally different from yours. But to answer your question, I would say it was a full 2 weeks before everything seemed to return to normal for me. Hang in there; this will get better for you. But I totally empathize with what you are experiencing; it was one of the most debilitating, frustrating, and exhausting experiences I've ever had -- and I'm no drama queen. It was totally preventable, in my mind, or at the least, there is no excuse for me not having any idea of what to expect post-insertion and being totally caught by surprise. My feelings on this have not changed. But, this too shall pass. You'll get there.
So it's been 2 months and 2 days since I had my tubes inserted. I'm happy to report that most of the serious hearing issues that began immediately after tube insertion -- everything sounding muffled, complete inability to hear lower/bass tones, and constant tinnitis -- have primarily subsided and life is back to normal for me. Muffled hearing has disappeared, all of my low tones have returned, and the tinnitis now only happens infrequently for brief periods lasting a few minutes at a time. I realize that this will not be everyone's experience, but it at least has been mine.
I can't say for sure, but it seems that most of the return to normal has been the physical healing of the ear drum (I've since learned that making incisions in ear drums severely enflames them to the point where it can be 5 or more weeks until their normal elasticity returns -- something else I was never told by my ENT), while the rest of it has been my brain adjusting to the new hearing environment that's created by cutting holes in each eardrum and shoving a tube in there. So the good news is that things eventually resolved for me and the debilitating hearing problems subsided and resolved, albeit slowly.
I can't help but say, though, how angry and frustrated I still am at how totally unprepared and uninformed I was about the possibility of the complications I, just as all of you, experienced immediately after the tube insertion. I am a very thorough and cautious patient when it comes to my health, and I ask a lot of questions -- particularly when it comes to procedures that doctors want to perform on me. My ENT and I must have talked for over an hour spread across 2 different conversations about the risks and complications of tube insertion, so I really did feel prepared and informed beforehand. Yet nothing he said to me at any time even remotely resembled what ended up happening to me. In short, I was completely shut down professionally for 2 weeks. I had to cancel all of my meetings, I couldn't perform any work task that required concentration because of the tinnitis, and I was completely exhausted all of the time. Being self-employed, this was a huge, HUGE blow for my business that was completely avoidable if I had just been properly informed (I could have planned it around vacation, etc.).
And from reading the entries in this conversation, I know that it wasn't just me and that there's hundreds, if not thousands, of people a year out there whose lives are seriously impacted by tube insertions and are totally caught by surprise -- and not because of a fluke of rare and unusual complications post-insertion, but because our ENT's just didn't bother to inform us of these possible complications -- they knew; they just didn't tell us. I don't mean to suggest that there's any kind of an evil ENT conspiracy to con and fool their patients; I just think that tube insertions are such a frequent and common procedure for ENT's to perform that they frankly don't take fully informing their patients as seriously as they should.
Hundreds of thousands of tube insertions a year are performed, so it's not like this is a new problem. Yet we were all completely in the dark. That's unacceptable to me, and the ENT community should be ashamed of this. I hope someone takes note and some new guidelines are issued through the various ENT associations that exist as to how to properly advise patients before tube insertions.
Knowing what I know now, would I still have gone through with the tube insertion? Hell no.
I would agree with Dr. Moser that it's probably not appropriate to advise against tube insertion universally. From my experience, and from reading about the experiences of dozens and dozens of us in this discussion string, I do think it's appropriate to strongly, STRONGLY caution anyone who has been advised by their doctor to get tubes inserted in instances where the symptoms the ENT doctor is trying to resolve haven't been definititvely diagnosed. In other words, in situations where the doctor can't specifically pinpoint the cause of certain symptoms, and s/he is then recommending tube insertion as an experiment to see if the symptoms improve or not, I do think it's completely fair to advise patients in this position to be hesitant and skeptical about tube insertion unless and until their ENT overwhelmingly convinces them that tube insertion really is the best and only way. All of us patients involved in this discussion are living proof that this is completely valid and fair advice.View Thread
Sorry, ArgiePam. I went back and read all of your previous posts, and you've answered my questions. And thanks for sticking with this thread the past couple of years; your input has really helped me and I'm sure it has helped others.View Thread
So if you've had the tubes in for 3 months, how are you doing now? Still having the tinnitis, muted hearing, and can't hear lower-pitched sound? Or has any of that improved? Or better yet, gone away? It would really be helpful to me to know these answers from you, and I apologize if you've already shared this earlier in the thread and I didn't see it.
For what it's worth, I just came from my ENT, and he did tell me that for a certain percentage of his patients (10-20%), of the subset of patients where the specific problem pre-insertion hadn't been identified, they do report problems with hearing post-insertion. For patients where the problem is obvious pre-insertion (high build-up of fluid in the inner ear, constant ear infections, etc.), he says that over 98% of them report drastic improvements in hearing. But for people like us where the insertion of the tubes was more experimental to see if our other symptoms would improve, he says that probably 10-20% of his patients report problems with hearing afterward. He said that if this percentage were considerably higher than this, he probably wouldn't be willing to insert tubes experimentally, but as long as it's this low, it's still worth a shot.
Other than this, they tested my hearing, as well, and told me that hearing in one ear has actually improved and in the other it has only slightly gotten worse (frustrating to hear this, for reasons you understand). My only reaction was to say that I was sorry that they couldn't recreate what I was experiencing in reality within their audio booth, but what I'm going through is indeed real and we need to resolve it by any means, and quickly. So I've been put on an oral steriod for a couple of weeks, as the ENT wants to be absolutely sure that all possible swelling and inflammation from the insertion has subsided, and if the hearing problems are still present at that point, we're going to remove the tubes immediately. If there's anything you know that would make this course of action a bad idea, please share it with me.
I did, by the way, mention this discussion thread to my ENT and that it sure seemed there were lots of people going through exactly what we are. He asked if I was able to learn anything from what others with these symptoms, but who had the tubes in for more extended periods, have ended up experiencing, and I let him know there wasn't a lot of follow up from folks who first wrote in soon after insertion after they had them in for awhile. So I'm really hoping more folks from this thread can follow up for this reason.
We're in this together, it appears, so I'll promise to hang in there if you do.View Thread
I am actually the same person as An_243271; for some reason, my original post you responded to last night did not post with my handle 'jbang' and instead posted with that one. So we are one in the same.
I'm perfectly willing to wait this out longer if I can be confident there's some hope at the end of it. I just can't emphasize enough how debilitating these symptoms have been.
I appreciate your advice and counsel on this. What you're now telling me is not that unusual for someone 8 days after tube insertion to be experiencing, I just wish I would have known about beforehand so I could have made an informed decision (even though I asked every question I could think of to get informed).
In any event, thanks again. I will also make it a point to come back to this discussion and update on what came of my symptoms after a few weeks time, as I know myself and others didn't see much of that on this discussion thread, and we would have really benefitted from such updates.
No, we haven't discussed any options yet; I was asked to follow up with the ENT's office today if the hearing issues had not resolved themselves, and I have put in a call to them. The tubes have been in for 8 days now.
In any event, it seems from your response this the best and quickest way to reverse my hearing issues is to just get the tubes removed, after consultation and agreement is reached with my ENT, of course.
So, that said, is it pretty straightforward that removing tubes from someone who had no previous hearing problems will simply restore hearing back to normal? What the risks are with having the tubes removed? Are there additional complications that can arise from doing so? Could I be making the hearing issues even worse?
I guess I just don't want to make a bad thing even worse by having them removed, and it's important to me that I'm armed with all of the right questions to ask this time, as last time I clearly didn't know what I didn't know, which has led me into the situation I'm in. And again, if I had any clue whatsoever that these after effects would be waiting for me after the tube insertion, there is NO WAY I would have had it done.
So if you were me, what questions should I be asking at this point? What do I need to insist upon, and where do I need to draw the line? I just want my normal hearing back.
First of all, thanks for replying and for maintaining your presence in this discussion that looks to date back a few years. It's very helpful.
For about 2 years now, I've had an unexplained need to contstantly pop my ears; it started in the right, and became bilateral about a year ago. It was accompanied by some mild facial pain, probably due to the fact I was contorting my face/jaw several hundred times a day to pop my ears. Hearing has always been perfect throughout (until the tube insertion), and never any issues with fluid or infections in the inner ear.
Before going the ENT route, I had work-ups by a dental surgeon (to eliminate TMJ), and a neurologist (to eliminate a host of neurological possibilities) that also tried Botox injections into several facial and scalp muscles, to no effect. Then I just decided to wait a year or so at my primary physician's recommendation to see if the issues just resolved themselves. They didn't.
So after seeing 3 ENT's, all of whom recommended the PE tube insertion, I agreed to do it. The idea of someone cutting holes in my eardrums made me hesitant, so that's why I got multiple opinions. Each of them were very cavalier about the recommendation -- 'let's throw some tubes in and see what happens' -- almost like they were recommending something harmless like taking an aspirin. Never was anything that I have been experiencing even indirectly mentioned, but after reading this discussion, it's clear that my symptoms are shared by many others with striking similarity. I feel I should have at least been warned of the possibility of all of this, but it's almost like these ENT's weren't aware of people having these kind of post-insertion complications.
But the immediate issue is that I'm completely shut down; I can't concentrate, I can't carry on conversations that require focus with my clients, I can't have meetings in restaurants, etc. -- these symptoms have totally hindered my ability to do my job. And being self employed, it could completely ruin my business if this goes on. I just want my hearing back -- I learned to put up with the ear popping and facial discomfort over time; it had just been an annoyance. But this is intolerable; I simply can't function.