Member@japongus my ENT diagnosed me with myoclonus you need to find a neuro-otologist they are more familiar with this condition. I found a doctor who does the surgery without cutting into your ear she goes in endoscopic through the nose so its less invasive. I think ive read the posts you are talking about. Let me ask you something do you only hear a sound and dont feel the eardrum and ear twitching? Is your sound 24/7? Like you i have tinnitus in both ears but the myoclonus is very different in sound and feel you would def know the difference. Also when my ear is twitching if i press on my eardrum the twitching stops (comes back after i take out my finger tho) do yours do that?
Myoclonus of the Middle Ear, Stapedius Muscle and Tensor Tympani Surgery
- Thread starter cullenbohannon
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Well, neurotologists seem to be mostly from the USA. Outside the USA, they only seem to trust research from inside the USA, and there's no documentation supporting going in there without eardrum dimples or key-like tympanogram. I went to an otoneurologist from Greece/USA called Aristides Sismanis but he's retiring now so I'm screwed again for now, and he said possible myoclonus but he was so cryptic and I was so nervous I didn't find out how much he really knew.
Another thing I'll say is that it isn't loud in my case. It's more of a sort of distortion, a hollow low frequency sound but mostly a feeling, however it is definitely a thump in the sense that I can hear the thump if the sound that provokes it is dry and not loud enough that it allows for complete silence after the event in those cases I definitely can hear the thump moving into position or back into relaxed mode. So no I don't merely hear the sound I definitely feel it, so if that isn't your case and you merely hear it I'm much more in the frontier between hyperacusis and myoclonus than you are.
Well I have high pitched ''tinnitus'' (that could just be the tensed up stapedial muscle) and low pitched rumbling (wtf that is, anything from the eustachian tube or the veli palatini to cochlear hydrops. The thump that follows sound around with a tiny latency in my case is a different thing to these other two continuous sounds I have. Whether its a different frequency to my low pitched continuous vibration I'm not sure.
So where did you find this doctor that goes in through the ear (and the eustachian tube I assume)? Outside the USA? Only very rarely have I had intense twitching of what was most probably the ear drum they were a lot more intense than the ones I have normally, and I've had this condition for 16 years. My normal condition is a much more subtle vibration and I admit that if the stronger rarer ones were permanent it would be really problematic, but because my threshold for the smaller kind of vibration is so low my condition is like chinese water torture.
Are you assuming you have stapedius muscle myoclonus and that it can only be heard without necessarily having to be felt?
Funny it was Dr. Sismanis who originally diagnosed me with Myo some seven or so years ago. It took me many years to find an ENT specialist (neuro-otologist) in my area w/ myoclonus middle ear experience. Both my ENT and neuro confirmed seeing my ear drums spasm during examination. I too have followed the threads of Lib, JoeM, Supersmooth, Astrid and others on their success and disappointment with the surgery. It is a mixed bag . Both muscles were cut since both are usually infected.
Is your area in USA with mega expensive everything unless you have insurance? Or is he outside the USA? If you can't say it in a forum, would you mind pming me his name? I think I may have blown a good chance, both economically and in quality of op, by being so indecisive in front of Sismanis in Greece, but I was so fucking enthralled by the negative reports I was totally overcome by doubt still am. Plus he nor anyone else doesn't seem to want to publish anything about it, and all the official literature still is ambiguous but most of all carries across the message that there are strict diagnosis patterns that real experts like Sismanis (how many has he done 2, 200???) clearly don't believe in. What did Sismanis say when I mumbled about why a tympanogram wasn't good enough, he said ''it's complicated''. Bloody great!
Also Btw, wow, through the nose? well that's definitely not yesterday's newspapers. @Chelles you sure you're not thinking of an exploration of the veli palatini or something?
Well this is an interesting question also. For two reasons. In the very rare times that I've had a sort of foreground twitching, really intense as I said, sure massaging around that area seems to help. Mostly though for many years with this brutal condition, with my sort of background type of myo (maybe stapedial as thats not in contact with the eardrum), sound provoked at any sound differential, as you can imagine sleeping is difficult. Well one of the tricks that helps is to press one of the ears down on a pillow and yeah it helps somewhat. Other tricks are putting a finger in the ear drum that's worse off of the two, or massaging the ear nearby or right on top of the drum, ofc I can't do that all the time. Also there are a few seconds of decreased sensitivity after taking the finger out, almost as if the muscles are wobbling back into their annoying positions.
I saw Sismanis in the US. He was practicing at a University in Virginia and highly recommended by Lib (he did her surgery). I believe he has retired since say 2008/9 unless he practices somewhere else. This I dont know. At that time the consultation fee was reasonable (about $200.00) and paid out of pocket. I also had to travel to Virginia from NYC but it was worth it. Japongus, where are you located?
Sure, but who finally operated on you? Someone on oval and window reinforcement got quoted 10k quid from Silverstein. You said you had to find someone in your area to do the operation itself. But anyways, I guess your issue wasn't as large as mine. I have to convince a ENT and neuro now of what Sismanis said of possible myo just through symptom description, whereas yours saw dimples on your eardrum, all the ENT ones I've been to say a certain pattern has to appear on tympanogram if dimples aren't seen on the eardrum. I'm in Spain and visited Sismanis in Greece this spring, he's about to retire in a couple of weeks from his Greece job. So I'm fucked basically, I doubted from what I'd read online, forgot to insist to ask if he was retiring (for some reason I took his 'take amitriptyline and keep in contact' advice as proof he wasn't, got hung onto whether the oval or window reinforcement surgery was for me or not. So now I'm just stuck but more stuck...
When I saw Sismanis he recorded a CD of my ear spasms for my use in seeking help back home. It was useless as no ENT was familiar with middle ear myo nor took the time to find out. I still have the CD. Japongus how you managed to live with this for 16 years is amazing. Many ENTs cant identify the ear drum dimpling. It takes a trained eye to see it. Is there no one else who can help you after Sismanis retires? Who is replacing him? Can Sismanis recommend someone?
I'm blown away by his retirement, he was saying to continue with amitriptyline and or wait a while. He had said surgery cost 3000 euros so I was going to go with him, no need to go searching for some clueless guy elsewhere plus no private let alone public spanish insurance would cover this. Well Sismanis didn't see the eardrum dimple either, said possible myoclonus because tympanography was irrelevant then said ''too complicated''. He's really cryptic, says very little in emails, less in person, and I doubt he'll respond to my question of who he knows that can do this. But if yours was recordable and Sismanis himself saw the ear dimple, and it took you 7 years to find someone... well I'm in for a bender... Are you not allowed to divulge the name of your local myo expert that finally listened to you?
Well I can sleep and read... I've read people that can't do those things. In the hyperacusis sufferers page I did a poll to see who else found startle pain a lot more painful than continuous pain and most said them too it was like this, so if this is hyperacusis or myoclonus is just going to be kept thrown under the rug while more useless millions of dollars of research are invested into stupid sound therapy trials.
My surgeon is Dr.Mathew Hanson. There is a website that lists the names and state location of doctors familiar with middle ear myoclonus and can perform the surgery. My doctor is on this list although he was referred by my ENT, an old timer who knows something or two.
Perhaps you can ask for a recommendation any way? Its just a name. Maybe try before its too late?
Perhaps you can ask for a recommendation any way? Its just a name. Maybe try before its too late?
Oh I've emailed him but time has passed and I doubt he'll respond. It's been exactly one year since I was sharing myoclonus info and books with PaulBe, I've been that indecisive and it's come to this. It's like frigging Dante's inferno. My biggest fear right now is that another otoneurotologist won't dx me and accept to a tenotomy when I'm ready to risk it or as part of a double feature with RW and OW reinforcement, because they all seem to think the stapedius protects the ear for some reason. On Monday I'm on the phone to a ton of them, despite how they'll all probably have answer phones asking for appointments... exciting riveting stuff. However if @Chelles is dxed with merely symptom description, all I have left to prove now is that merely with symptom description is also good enough when the thumps are mostly merely attached to sound, instead of going off on their own unprovoked.
My experience : TT and Stapedius myoc started in one ear, then the other, on and off, for a couple of years. Had the tenotomy surgery done on both muscles in both ears, and it worked. The one downside : loss of acoustic reflex (or stapedius reflex, google it
means loud sounds, especially self-vocalisation, is very uncomfortable. But it's easy to get custom-made ear protectors and use them for when you know you'll need them. It's still a small price to pay in exchange of not having a drum solo in your head. After a couple of years after surgery, I sometimes perceive a mild version of the symptoms. Most probably because a muscle can still contract even if one end has been severed. But it's no longer tugging at your eardrum, so the sensation is not half as bothersome. Peace.
means loud sounds, especially self-vocalisation, is very uncomfortable. But it's easy to get custom-made ear protectors and use them for when you know you'll need them. It's still a small price to pay in exchange of not having a drum solo in your head. After a couple of years after surgery, I sometimes perceive a mild version of the symptoms. Most probably because a muscle can still contract even if one end has been severed. But it's no longer tugging at your eardrum, so the sensation is not half as bothersome. Peace.My experience : TT and Stapedius myoc started in one ear, then the other, on and off, for a couple of years. Had the tenotomy surgery done on both muscles in both ears, and it worked. The one downside : loss of acoustic reflex (or stapedius reflex, google it
What kinds of hyperacusis or sensitivity to sounds did you have and what kinds of tinnitus did you have before the operation and did they change?
Hi i have the same symptons as you had, but i have had a middle ear ct scan and my consultant said everything is ok? Would you see on a scan if it was stapidiel? My head vibrates all night long and i dont feel i can live like this x thank you for listening.
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