Hello, my name is Brian and I would like to share my story. Perhaps there is something I am missing where I could receive help, and perhaps my story could provide some help to others. If nothing else, maybe some members can relate to my story and we could provide support to each other.
Over the past several years, I had a symptom that others have mentioned on here in other threads, where I was both hearing and feeling a click/flutter in my left ear whenever I blinked. Two neurotologists diagnosed this as most likely the stapedius muscle vibrating when I blinked. With much of the information I had researched myself and have been fortunate to find on this board, I knew that it could also be the tensor tympani. Both doctors were 100% sure it was the stapedius, and all but shut me down when I asked about the tensor tympani. One doctor would only do the surgery under general anesthesia and the other was willing to do it under local anesthesia, which was my preference.
On the day of surgery, even though I knew I would be awake for the surgery and could "test out" what happened when he cut the stapedius, I pleaded with him that if there was any doubt, to cut both the stapedius and tensor tympani, as I did not want to go through through two surgeries. We agreed to cut the stapedius, and see what happened, since I would be awake during the surgery.
The surgery was very quick, and upon seeing my tendons, he asked me to blink. It was confirmed that my stapedius was vibrating with each blink, and the nerve was cut. I was asked to blink again, and it did the trick. No more clicking/fluttering when I blinked. The doctor put the packing in my ear and told me what to expect in the recovery.
My left ear of course felt plugged, which I knew would happen, but a week into recovery, I knew something was wrong. Randomly, my left ear would go from totally clogged and unable to hear anything, to feeling like it was wide open and I could hear normally. This would happen in about 10 second increments, before eventually going back to feeling fully plugged. I hadn't read about this happening to anyone else in recovery, and knew this was the first step of something going wrong. The doctor assured me it was probably just the packing dissolving, and to wait it out. A few days after this started, a new issue started, and is the reason why I am writing this post. All of a sudden, whenever I swallowed, and only when I swallowed, I would hear a loud click/squish/pop in my left ear. Soon this spread to both ears. I again called my doctor and was again told to wait it out, though he acknowledged it was weird to be experiencing this in my non-operated ear as well. I eventually was able to get in to get the rest of the packing out, but it did nothing to resolve this new symptom which I have now been battling for 4 months.
I still now hear a loud, impossible to ignore pop in both ears when I swallow. First, my doctor said to do a nasal wash and try Flonase. These did nothing. Then it was thought that maybe it was patulous, so I tried PatulEND, which also did nothing. Upon examining me, he saw no obstruction of my Eustachian tubes, and nothing abnormal. I was put on Prednisone, which didn't help. PPIs were also tried. Throughout this time, hearing tests were coming back normal, with the exception of one dip on every test, which I came to learn often coincided with Eustachian tube dysfunction. I was also showing some negative pressure on the tests, which was also confirmed by several doctors by looking at my eardrum, which had become retracted. The EarPopper, Valsalva maneuver and Otovent did not help. The doctor offered to put in ventilation tubes, but outright told me that since there was no fluid in my ear, that he didn't expect them to help.
At this point, still not even having a diagnosis on if I had obstructive or patulous Eustachian tube, I sought out an ent who performed Eustachian tube balloon dilation. He said my case sounds like classic Eustachian tube dysfunction, and that he would do the dilation on me, but I held off, knowing that this procedure could cause patulous, and make things worse. I've actually had several ENTs outright warn me about it and tell me not to do the procedure.
At this point, feeling like I need more of a level of expertise, I made 10 hour round trip drive to Baltimore to visit Johns Hopkins, and visit a doctor who worked closely with Dr. Poe. The doctor was excellent, but also was stumped. His suggestion was that this could be TMJ, and to seek out TMJ physical therapy.
I went to my dentist, who checked me for about 10 seconds, and said I don't have TMJ, but to go to a surgeon to check. The surgeon spent about 20 seconds with me, and said not only do I not have TMJ, but that my bite was the best he had seen that day, and he was confused why I was there, since to him, this was clearly an ear issue. I sought out one more dentist who focused on TMJ. He did jaw tracker tests on me, and was finding very little to suggest TMJ. He was about to tell me he couldn't help me, when he then asked me to swallow, and the results on the test screen went crazy. Both him and his dental assistant let out a verbal "whoa" and he nearly fell over. I was happy to know I wasn't going crazy, and that something was happening when I swallowed. He diagnosed me with TMJ, however, deep down, this still feels like an ear problem to me. It would be quite a coincidence that TMJ started up a week after my ear surgery.
I am currently awaiting a mouth piece for my TMJ, but I am skeptical it will solve the issue of the popping/clicking when I swallow. I say that because he then recreated on me what the mouthpiece will do and how it will be positioned, but it wasn't helping. He said it could take some time for the adjustment to take, but I'm pessimistic. I will also be starting TMJ physical therapy in a few days.
I feel like this is going to be another very expensive dead end. The jaw tracker test going bonkers when I swallow did provide me some ability to accept that it could be TMJ, but I guess I will find out. I feel like it's still my ears because now when I blow my nose, or yawn, I can feel movement and sounds in my Eustachian tubes that I never was able to feel before. I have the ENTs telling me it's a dental problem and the dental guys (except the most recent one), telling me it's an ear problem. Even the most recent ENT seems baffled as to how my specific symptom could cause the ear sounds.
I am still considering the ventilation ear tubes and the balloon dilation, though I am afraid of both. I am afraid of the dilation giving me patulous and am afraid of the ear tubes making things worse, as well as possibly bringing back my vestibular/balance problems. I also wonder if cutting the tensor tympani could work, but that also wouldn't make sense since only one ear was operated on, but the swallow issue happens in both ears. The same is true with my thoughts of any surgery on the tensor veil palatini. In terms of just thinking through it in other ways, I've wondered if something like gel foam could be injected in my tubes, if nothing else, just to try to change the way my Eustachian tubes move for whatever is going on that is causing this noise when I swallow. I know that won't solve the root of the issue, but I honestly care more just about solving the symptom, even if it's a band aid solution. I haven't been able to find a doctor to feel this could be a viable route. Ear plugs provide little to no help, as I've tried packing my ear externally, but it's definitely emanating on the side of the ear.
I don't know what to do, but am doing my normal routine tonight of trying to read and learn about what this could be, all while slowly going insane. This has taken over my life. I cringe and curl up with each swallow, knowing the pop and click is going to be there. I have to do something.
Thank you for reading. If there is anything in my story that you think I am missing that could help me, I would be sincerely grateful. If you are fighting a similar fight and have any questions, I would be happy to answer. If you are fighting a similar fight and need a friend, I am here.
Over the past several years, I had a symptom that others have mentioned on here in other threads, where I was both hearing and feeling a click/flutter in my left ear whenever I blinked. Two neurotologists diagnosed this as most likely the stapedius muscle vibrating when I blinked. With much of the information I had researched myself and have been fortunate to find on this board, I knew that it could also be the tensor tympani. Both doctors were 100% sure it was the stapedius, and all but shut me down when I asked about the tensor tympani. One doctor would only do the surgery under general anesthesia and the other was willing to do it under local anesthesia, which was my preference.
On the day of surgery, even though I knew I would be awake for the surgery and could "test out" what happened when he cut the stapedius, I pleaded with him that if there was any doubt, to cut both the stapedius and tensor tympani, as I did not want to go through through two surgeries. We agreed to cut the stapedius, and see what happened, since I would be awake during the surgery.
The surgery was very quick, and upon seeing my tendons, he asked me to blink. It was confirmed that my stapedius was vibrating with each blink, and the nerve was cut. I was asked to blink again, and it did the trick. No more clicking/fluttering when I blinked. The doctor put the packing in my ear and told me what to expect in the recovery.
My left ear of course felt plugged, which I knew would happen, but a week into recovery, I knew something was wrong. Randomly, my left ear would go from totally clogged and unable to hear anything, to feeling like it was wide open and I could hear normally. This would happen in about 10 second increments, before eventually going back to feeling fully plugged. I hadn't read about this happening to anyone else in recovery, and knew this was the first step of something going wrong. The doctor assured me it was probably just the packing dissolving, and to wait it out. A few days after this started, a new issue started, and is the reason why I am writing this post. All of a sudden, whenever I swallowed, and only when I swallowed, I would hear a loud click/squish/pop in my left ear. Soon this spread to both ears. I again called my doctor and was again told to wait it out, though he acknowledged it was weird to be experiencing this in my non-operated ear as well. I eventually was able to get in to get the rest of the packing out, but it did nothing to resolve this new symptom which I have now been battling for 4 months.
I still now hear a loud, impossible to ignore pop in both ears when I swallow. First, my doctor said to do a nasal wash and try Flonase. These did nothing. Then it was thought that maybe it was patulous, so I tried PatulEND, which also did nothing. Upon examining me, he saw no obstruction of my Eustachian tubes, and nothing abnormal. I was put on Prednisone, which didn't help. PPIs were also tried. Throughout this time, hearing tests were coming back normal, with the exception of one dip on every test, which I came to learn often coincided with Eustachian tube dysfunction. I was also showing some negative pressure on the tests, which was also confirmed by several doctors by looking at my eardrum, which had become retracted. The EarPopper, Valsalva maneuver and Otovent did not help. The doctor offered to put in ventilation tubes, but outright told me that since there was no fluid in my ear, that he didn't expect them to help.
At this point, still not even having a diagnosis on if I had obstructive or patulous Eustachian tube, I sought out an ent who performed Eustachian tube balloon dilation. He said my case sounds like classic Eustachian tube dysfunction, and that he would do the dilation on me, but I held off, knowing that this procedure could cause patulous, and make things worse. I've actually had several ENTs outright warn me about it and tell me not to do the procedure.
At this point, feeling like I need more of a level of expertise, I made 10 hour round trip drive to Baltimore to visit Johns Hopkins, and visit a doctor who worked closely with Dr. Poe. The doctor was excellent, but also was stumped. His suggestion was that this could be TMJ, and to seek out TMJ physical therapy.
I went to my dentist, who checked me for about 10 seconds, and said I don't have TMJ, but to go to a surgeon to check. The surgeon spent about 20 seconds with me, and said not only do I not have TMJ, but that my bite was the best he had seen that day, and he was confused why I was there, since to him, this was clearly an ear issue. I sought out one more dentist who focused on TMJ. He did jaw tracker tests on me, and was finding very little to suggest TMJ. He was about to tell me he couldn't help me, when he then asked me to swallow, and the results on the test screen went crazy. Both him and his dental assistant let out a verbal "whoa" and he nearly fell over. I was happy to know I wasn't going crazy, and that something was happening when I swallowed. He diagnosed me with TMJ, however, deep down, this still feels like an ear problem to me. It would be quite a coincidence that TMJ started up a week after my ear surgery.
I am currently awaiting a mouth piece for my TMJ, but I am skeptical it will solve the issue of the popping/clicking when I swallow. I say that because he then recreated on me what the mouthpiece will do and how it will be positioned, but it wasn't helping. He said it could take some time for the adjustment to take, but I'm pessimistic. I will also be starting TMJ physical therapy in a few days.
I feel like this is going to be another very expensive dead end. The jaw tracker test going bonkers when I swallow did provide me some ability to accept that it could be TMJ, but I guess I will find out. I feel like it's still my ears because now when I blow my nose, or yawn, I can feel movement and sounds in my Eustachian tubes that I never was able to feel before. I have the ENTs telling me it's a dental problem and the dental guys (except the most recent one), telling me it's an ear problem. Even the most recent ENT seems baffled as to how my specific symptom could cause the ear sounds.
I am still considering the ventilation ear tubes and the balloon dilation, though I am afraid of both. I am afraid of the dilation giving me patulous and am afraid of the ear tubes making things worse, as well as possibly bringing back my vestibular/balance problems. I also wonder if cutting the tensor tympani could work, but that also wouldn't make sense since only one ear was operated on, but the swallow issue happens in both ears. The same is true with my thoughts of any surgery on the tensor veil palatini. In terms of just thinking through it in other ways, I've wondered if something like gel foam could be injected in my tubes, if nothing else, just to try to change the way my Eustachian tubes move for whatever is going on that is causing this noise when I swallow. I know that won't solve the root of the issue, but I honestly care more just about solving the symptom, even if it's a band aid solution. I haven't been able to find a doctor to feel this could be a viable route. Ear plugs provide little to no help, as I've tried packing my ear externally, but it's definitely emanating on the side of the ear.
I don't know what to do, but am doing my normal routine tonight of trying to read and learn about what this could be, all while slowly going insane. This has taken over my life. I cringe and curl up with each swallow, knowing the pop and click is going to be there. I have to do something.
Thank you for reading. If there is anything in my story that you think I am missing that could help me, I would be sincerely grateful. If you are fighting a similar fight and have any questions, I would be happy to answer. If you are fighting a similar fight and need a friend, I am here.
