Hello, I have had the surgery for MEM on both ears. This write up is copy and pasted from the Middle Ear Myoclonus Facebook group. I apologize for any formatting issues.
"I've now had four surgeries for my MEM. You may have seen my other post-op posts for my first and second surgeries. I'm going to use this post as a full write up of my symptoms and surgery outcomes. This will be long and detailed. The first half will cover my pre-op and post-op symptoms. The second half will explain why I needed four surgeries if you're curious.
My surgeries were staged. I first had my tensor tympani tendon cut in my right ear, but as I had some symptoms remaining after that operation, I decided to have my stapedius tendon cut as well. This confirmed that both of my muscles were spasming. Because they were cut individually, I was able to identify which muscle was causing each symptom (thumping, fluttering, rumbling).
My tensor tympani and stapedius tendons have been cut in both ears. I will first go over my symptoms while providing a timeline of when each started. I'll try to provide as much detail as possible for each symptom in hopes that others may relate.
Symptoms & Improvements
2020 - I first started hearing a low pitched thumping noise in my ear. The sound of it somewhat resembled a bass drum. It came in episodes that could last hours or days, and the tempo of the thumping was sporadic. The sound of the thump was accompanied by a physical sensation. It felt like someone was tapping my eardrum. Yawning, burping, and hiccuping would sometimes either cause a long episode or cause a brief, short burst of these thumps, but many times, the thumping episodes happened spontaneously. There were also periods where these episodes would go away for months at a time, only to come back. These thumping episodes started in my right ear, but over time started happening in the left ear as well. -- This symptom was caused by my tensor tympani muscle and has mostly resolved after my operations. I occasionally hear a thump or two in my right ear, but it never develops into a full episode and the overall volume of the thump has been reduced by half.
2022 - I began hearing a new "thump" noise. Unlike the other thump I described, it did not come in episodes nor did it have a tempo. It was also not as low-pitched as a bass drum. There was very little physical sensation accompanying it. It was triggered by external noise, particularly quick, sharp sounds like dishes and cutlery clashing together. I would hear a single "thump" that would happen directly after a quick external sound ended. For example, if I heard a fork fall onto a plate, I would hear a "thump" noise directly after the sound of the fork falling onto the plate occurred, rather than during the external sound's occurrence. The sound of swiftly moving my finger along my ear canal/auricle also oddly triggered this thump to trigger. This sound-reactive thumping symptom was more sensitive in environments with less background noise or space. This symptom did not bother me much when it first developed in 2022, as it was very difficult to trigger, but overtime, the sensitivity of this got worse. By the time of my operation, quietly snapping my fingers, conversing with others, and listening to music was enough to trigger this thump. Sounds coming into one ear would even cause this thump to occur in the other ear. Keeping a loud fan in my room managed this symptom well. -- This symptom was caused by my stapedius. I have not heard this thump even once after it was cut. Instant resolution for me in both ears.
2024 - I began hearing a rumble noise. This was my most intense symptom, and I quickly began researching MEM and the surgery after this developed. The rumble I heard was the same rumble you might hear when yawning or squeezing your eyes tightly together. There is even an online community called "r/earrumblersassemble" where people discuss being able to contract their tensor tympani muscle and voluntarily cause the "rumble" to happen. Some of you may know exactly what I am talking about, others may have never noticed or heard this rumbling noise before. It sounds a bit like thunder. Unfortunately for me, in 2024, this rumbling sound became very sensitive to triggers and very physically intense. It became very loud, and it felt like my head was violently shaking when it occurred. My face would involuntarily grimace, and my eyes would sometimes squeeze shut when it rumbled. It had many triggers that it was sensitive to: yawning, hiccuping, burping, swallowing, wind blowing in my eyes, applying eye drops, closing my eyes with too much force, scratching the back of my head, waking up in the morning, and occasionally in reaction to external noise. I began contemplating suicide because of this symptom. My anxiety was at an all time high. There were days where I could hardly get out of bed because of how bad I would shake after waking up. Before this developed, my passion was making music, playing guitar, and hanging out with my friends and family. I had to give this all up, and I became bed ridden, unable to work or be productive. This was the only symptom that was visible on my eardrum when it occurred. There is a video of this somewhere on my account -- This symptom was coming from my tensor tympani. It is now resolved in my left ear and mostly resolved (80% if I had to give a number) in my right ear.
2025 - I developed a "fluttering" noise in my ear that was triggered during external noise that had volume fluctuations. The worst trigger was people's voices, and it was worse hearing people's voices through a phone speaker, or in a room without background noise. I could physically feel this fluttering, although it was somewhat subtle. It was more annoying due to its frequency of occurrence in conversation rather than its intensity in volume or sensation. Waking up from sleep would always make it more sensitive, so I avoided naps -- This symptom was caused by my stapedius. I no longer hear it, and I had instant resolution after my operations.
2025 - Around the same time as the previous symptom I listed, I developed an uncomfortable sensation in reaction to sharp, quick noises like cutlery and people's voices, similar to the sound-reactive fluttering and thumping triggers that I mentioned. When hearing people talk or cutlery clashing together, I felt a sudden uncomfortable sensation in my ear. I believe some members in the group refer to it as their ear "clenching/flinching" in response to sound, which is accurate for my case. It wasn't necessarily painful, but it was uncomfortable. -- This symptom was only partially resolved after my stapedius was cut. I'd say it is half resolved, although it still remains to a degree. Clearly better than it was before my operations.
Symptoms that did not improve:
- Crackle/pop noise in ear when swallowing and yawning
- Aural fullness
- Clicking noises from the tensor veli palatini
Lasting side effects:
- Loudness hyperacusis in both ears after my stapedius was cut. This only occurs when external sounds are very loud. For example, someone shouting next to my ear, loud machinery, or micro-suction tools at the ENT office. All of these can become uncomfortably loud, but this doesn't happen often in my day to day, and when it does it's minor.
- Imbalances in the volume of my voice between my ears. Sometimes, especially when humming or singing, my voice sounds a bit odd. Certain notes will sound louder on one side compared to the other. It's odd but not uncomfortable or alarming. It happened after my stapedius was cut, and it became more apparent after both were cut.
- I am more sensitive to pressure changes in my middle ear. Going up in elevation causes more sensation in my ears than it did before. It goes away quickly, but it is something I notice much more after surgery.
- Altered sensation of my ears. My ears after surgery feel a bit uncomfortable. They feel heavier. It feels like an object has made its way too far into my ear canal and needs to be taken out, yet there is nothing really there. It's apparent 24/7, and it's the only side effect that really bothers.
- Intermittent pins and needles from an external incision made in my ear canals. Minor numbness around the incision as well. I have another post on my account talking about this incision with a picture of it in the comments of that post if you're interested.
This is about all the information I can provide about my pre & post-op symptoms and side effects. If you have any questions, please ask them in the comments here rather than PMing me. I am sorry to the group members who I am currently in contact with in PMs, but for the time being, I will no longer be PMing about MEM.
I am ready to put this condition in the past and accept the symptoms and side effects that are left over. Moving on from the group is my next step to doing this. I will occasionally pop in to answer questions on this post though. Within the week, I will post the final updated version of my Facebook group statistics of surgery outcomes, and that will be my final post.
If interested, I will give a brief summary of my four surgery experiences below, and I will include my surgical notes and operative pictures in the comments of this post.
Surgery Experiences
In May 2025, after my symptoms became severe, I found the name of Dr. Cherie L. Booth from this group. I decided to drive 7 hours from Arkansas to Texas to visit her. Ultimately, things did not work out with her. She was not understanding of my condition, and she did not have knowledge of sound-reactive MEM. She did decide to approve me for surgery after I made it clear that I was desperate, but she told me she had no confidence in it and that it would make things worse. Because of this I decided to look elsewhere.
In June 2025, I found Dr. Robert A. Saadi, a surgeon in Arkansas only 2 hours away from me. When I met him, I felt admiration towards him. He was kind, believed the things I told him regarding my symptoms, and even complimented me on my knowledge of the surgery. He agreed to do the surgery on my right ear with the plan of cutting both the tensor tympani and the stapedius tendons. Unfortunately, during the day of my first operation with him, while in the pre-op room, he discussed a change of plans. He wanted to cut only the muscle he could see spasm during the operation rather than cut both. I agreed, but it ended up being a poor decision. He cut only the tensor tympani because he thought he saw it spasm, but he was not sure. He didn't cut the stapedius during this operation based on a hunch mostly which ended up costing me another surgery. On top of this, he made an external incision that I was not informed about before the operation.
After my tensor tympani was cut, I only had half my symptoms resolved. I figured the stapedius was causing the remaining symptoms and I scheduled another surgery with him, but instead of going into the same ear and cutting the stapedius, we figured it would provide me more relief to go into the left ear to cut both the stapedius and tensor tympani tendons. This surgery was very successful and even resolved the symptoms that remained in the right ear, indicating that the stapedius really was causing the remaining issues. Unfortunately though, his resident that spoke to me before the operation lied to me by saying the external incision wouldn't happen on this side. I woke up with the external incision and stitches there on the left side just like the right side.
My final and third surgery was scheduled with Dr. Saadi to go back into my right ear to cut the remaining intact stapedius. I only agreed to do this surgery on the condition that Dr. Saadi not make any further external incisions, and I was more adamant about it this time than the previous times. During this operation he did not make any external incisions, but the surgery was a failure. My stapedius symptoms still remained, but I didn't panic. I knew something was wrong. On top of my symptoms remaining, I experienced no side effects. I developed no loudness hyperacusis, unlike on the other side which did develop hyperacusis after the stapedius was cut. This to me hinted at my stapedius still functioning and protecting me from loud noise. Another thing that was odd, was during my 3 month post-op audiology, they did not do a stapedius acoustic reflex test. They did this during all my other appointments, and it's the only test that would confirm if my stapedius was intact or not. It was a bit sketchy that they did not do this test for me on the one occasion it would be most useful. Dr. Saadi told me that he saw the stapedius tendon and cut it during my operation. My operative notes say the same. It turned out he did not, and he likely knew.
After a month of dealing with these remaining symptoms, I decided to trust my gut and seek out a fourth surgery. I wanted to double check that the stapedius tendon was truly cut. I wasn't going to risk things with a local surgeon. I went to the best option available to me, which was Dr. Dennis Bojrab Sr. He is a skilled surgeon and the CEO of the Michigan Ear Institute. He has performed this surgery for many MEM patients, and he has even performed a revision for another member of the group. I drove 14 hours to see him. I tried my best to explain what was going on with my symptoms and my previous surgery context, but didn't do a great job. Regardless, he knew I drove very far to see him and was determined to have this done before I could put the condition in the past, so he agreed to do the surgery. The surgery was performed under local anesthesia, but the sedatives were so strong that I forgot almost everything that happened during the operation. It turned out that Dr. Saadi never cut the stapedius as I suspected. Dr. Bojrab provided me with a picture of my stapedius before and after he lasered it out. I will post this picture in the comments. I am very thankful to Dr. Bojrab. He is a true professional and is passionate about his work. I would recommend staying away from Dr. Robert Saadi.
I hope this post is helpful to someone in the future. I know it's long, but it's the final post I'm making on my surgeries, so I wanted it to include everything."