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bigfred31

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Posts: 63
Reply with quote  #1 

how did they come to that diagnosis. did a ent do the surgery or did nuerosurgeon do it. my doctors said i have sensitive ears and take neurontonin. i need proof that tts or stapedius myoclonus is a viable option or maybe i patulous esutachian tubes but now i dont know. im lost and cannot sleep for anything. plus i asked the ent about patulous eustachian and he said there cis no treatment for that. it is tough with no job and insurance. do all ents know of tts or stapedial myoclonus.  do i need a specialist or what. so if i had stapedial myoclonus would the clicking in my ear be voluntary. because when i move my jaw a certain in can hear clicks. plus certain sounds sounds like loud distorted microphone in my ear or like blown speaker.

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Nowhearthis

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Posts: 19
Reply with quote  #2 
Have you been seen by an ent doctor? Did an ent diagnose you
with PET? I have been told I have PET but I don't have typical
symptoms. And, I believe there is treatment for PET to minimize
discomfort, just need to find the right doctor.

Most ents know nothing about myoclonus (tensor tympani, stapedial, palatal). You might want to see a neurologist if
you have not already. I know you have limited resources, but your doctor can refer you to one (even if you are on government health plan). Its difficult when you don't have private insurance is it not?

How are you managing with limited sleep? I recently read
something about sleep myoclonus. Do the meds help any with
this?

Nowhearthis
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lib

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Posts: 272
Reply with quote  #3 
i too was dxed with pet, but i have myoclonus. dr poe in boston does try to correct pet surgically.  he told me sensitive hearing is not a symptom of pet. myoclonus can cause pet like symptoms, they both are difficult to diagnose. feel free to bring up my posts and read my jouney.....it will be helpful.
lib
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Reply with quote  #4 
hello fred,

i had both muscles cut in one ear which did not help at all. it didnt even reduce the symptoms, just made them worse in the beginning. normally, the muscles react in a reflex to sudden and loud sounds so that the inner ear is protected. now theres no stapedial reflex left so my ears cannot handle loud impuls sounds anymore. im sure this is not what you wish to have.

your questions:
1. i was diagnosed by the method of variable tympanometry by several audiologists. it appeared that to most frequencies the muscles in that ear were overreacting, so there was a conclusion of a tense stapedial and/or tensor tympani.
2. the surgeries were done by an ENT. neurosurgeons do not do this.
3. most ENTs do not know anything about the disorders you mentioned.
4. yes you need a specialist who knows about myoclonus in the ears and can give you proof of other, succesful surgeries if you consider that. it took me years to find one.
5. i never had clicking and my thumping/spasming/rattling is not voluntary but only in response to certain frequencies, no matter the loudness.
6. clicking to jaw movements seems mechanical, merely a sound from the jawjoint.

hope this helps some,

take care!
astrid


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