stapedial myoclonus or tensor tympani syndrome

[lib]

hi
does anyone know the difference between the two, treatment for tts can sometimes be sound therapy.
how are each diagnosed?
thanks lib

[Lisa]

Hi Lib, I have this information written down somewhere, but I am back on medication once again, so a little slow on the move to find it..


Will hopefully be able to track it down tonight.
Take Gentle Care

Lisa

[lib]

thanks lisa!
i would love to know the difference between the two, and how they can tell.
just read your post about the hearing closeing off, i had that last fall, and a few brief ones scince, i think it is the muscle causing pressure change or something.
do you ever get a deep thumping that goes on for hours?
thanks, take care! lib
oh what new med are you on now?

[Lisa]

I have that deep thumping EVERY day!

and i am just back on the clonazapam, it effects me so strongly, and its the only one that i don't have to wait to get up to blood level over the course of a few weeks

I hope you are feeling better these past few days.

Take Gentle Care

Lisa

[lib]

hi lisa,
that deep thumping is maddening!
did you ever find the info you have about the difference between the two?
in my research i believe that the thumping has to be the tt, it is bigger and deeper, the location seems to fit, i think thats why when we burp it thumps, its right there at the e tube, the stapedial is higher and in the back part of the middle ear...what do you think?
i cant take the klonopin its too much, they will probabley push an antiseizure on me next. no thanks!
i want the muscles cut, and i am going to push for that next week.
i will also ask about botox. how much klonopin do you take?
does it help at all?
thanks!
take care, lib

[kemper]

Hello all,
I just recently had an appointment to see my ear doctor, and we discussed some of these things, so I thought I would share what I learned.

Regarding tensor tympani versus stapedial muscle, I asked my doctor if there was any way at all to determine which muscle is the cause of my spasms. He said there really is no way to be sure, because the muscles involved are too small to measure with electrodes. I wanted a better answer than that, especially since I am really considering the surgury, and if they are going to go in and cut something I want assurance that it is indeed the problem muscle. At the appointment, I brought my pitch pipe with me and blew that "A" at 440 Hz that is almost guaranteed to set my ear off. Well, it worked, and the doctor looked into my right ear with his viewer while I was doing this. He said he was unable to see any movement of my eardrum. This reinforced his belief that it is the stapedial muscle that is having spasms.

I brought up botox, and whether or not we could inject the muscle with that instead of cutting it. He said the actual size of a stapedial muscle (the smallest muscle in the human body) is about the size of a human hair, and that there is no needle available that can work at that level. And, he said that he would still have to make an incision around my eardrum just to access the muscle.

So altogether, nothing good to report about my latest appointment. My doctor recommended I get a second opinion, so I asked him who would be the best doctor world-wide to see for something like this. He is supposed to get back to me with the name of some doctor in New York City who only deals with tinnitus. So I am still waiting on that information.

take care,
Kemper

[lib]

TEXT
hi kemper,
thank you for posting your info, you did learn something very important and that is that he did not see the drum moving, you see if i breath or do certain things they can see my drum moving, so by shareing info, it is a way to sort out the differences.
i will go back and read your symptoms, or could you post a list of them?
who is your current dr?
where do you live?
please share the name of the dr who is in new york also.
i am going to see a top neurologist at johns hopkins tomarrow, he specializes in myoclonus and muscle movement disorders.
my other two drs did look into botox, it has never been done in the middle ear, as it is too difficult to deliver to those muscles. what risks were you told of with the surgery?
one of my docs says it is tolerated well the other is not really in favor of it.
thats great he wants a second opinion, thats a good dr! most would never do that, it is important to have a few great docs working on your case and the good ones are always for that!
please let us know and i will share what i learn tomarrow as well.

take care, lib

[kemper]

Hello again,

Libby, to answer some of your questions, my symptoms occur only in my right ear, and the sounds that cause it are very frequency specific, with the predominant sounds being female and higher pitched male voices, and the musical note A at about 440 Hz. That is the simplest way I can put it. I am planning to write a detailed account of what I experience (similar to Lisa's story), and when I have completed that project I will post it.

I live in Madison, Wisconsin, and my ear doctor is Dr. Mark Pyle at the University of Wisconsin. He is an Otologist and Neurologist. The fact that he is unable to see my ear drum moving when I experience the spasms does not totally convince me that the tensor tympani muscle can be ruled out. This muscle is slightly bigger than the stapdial muscle, but still quite small. I'm not convinced that the amount of muscle movement it is capable of is enough to be seen on the outside of the eardrum. But then again, I don't know much about physiology, and unless there is some tricky periscope-like device, I am quite unable to look inside my own ear for myself.

Regarding the doctor in NYC I was referred to, I am still awaiting that information. My doctor may have forgotten about me, so I might need to remind him again. If I do get a referral, I doubt my health insurance would cover the cost to go and see this doctor. (the downfall of HMO's) So I will likely have to pay out of my own pocket for it. At this point, if money is what it takes to fix this condition, I will gladly find a way to pay for it.

best wishes,
Kemper

[Lisa]

Kemper,

I am glad that you have been able to see someone, and atleast get some more definitive information.

I am actually looking for peoples stories to put on my site, they can be annonymous, using a "pen name"

You can view my story on the new improved site @ www.aloofhosting.com/stapedialmyoclonus/

anyone willing to share their stories please let me know.

Lisa

[lib]

hi all,
well my visit to the neuro was interesting, i am learning a lot, and i am a complex case.
we are talking about antiseizure drugs and of course cutting the muscle as a drastic option.
my neuro did not want to prescribe anything till he spoke to my other docs.
it is suspected that a virus/infection triggered my problems and they are just going to refer to it as palatal for now.
he did say the drugs could resolve it, it could resolve on its own, that i doubt. and if they sever the muscles in one ear it might resolve it on the other side.
he will be getting back to me by the end of the week.
i am afraid of these drugs, they sound terrible.
kemper please let me know about the dr in ny.
i live in virginia so its not that far for me.
take care!
lib

[Lisa]

HI Lib,

I really hope that if you do go the medication route that you do try the trileptal, as Ricochet did, She has had SO much success, and VERY LITTLE side effects.

I too have an appt with the neurosurgeon, and I will be discussing at further length with him the possibility for drugs, because if i choose to have a surgical procedure to repair the dehiscence, I will unfortunately be on a wait list of likely more then a year.

Take Gentle Care of yourself Lib, and kemper

and remember we are here if you need someone to lean on.

Lisa

[lib]

hi to all,
lisa did you try the trilpital?
i also am wondering why you would have to wait so long for sscd surgery.
i have not heard back from the neuro yet and he said by the end of the week.
i am so miserable, i am really more inclined to cut the muscles.
another guy i am talking to said trt is helping him.
lib

[kemper]

My doctor finally got back to me with the information about the tinnitus specialist. His name is Abraham Shulman, and he is in Brooklyn, NY. It looks like the information I have about the institution he is at is abbreviated, for all it says is SUNY/HSCB, at the address 450 Clarkson Ave, P.O. Box 1239, Brooklyn NY, 11202-1239

[lib]

hi,
well i found a new neuro who was great, hes sending me for a much better mri of brain and face, looking for that random snapping sound in mt nose/palate. i also found a great otoligist who could verify it is the tensor tympani moving the ear drum, i am going to schedue surgery if my mri is clear.
i have had 2 top docs both say that cutting the tt is done a lot for different reasons even going in for infections and other surgeries people do well and most dont notice.
wondering what any ones opinion is on this.
thanks, lib

[EarXPlode]

Hey all,

Most of you don't know me, except for Lib, I am usually on the hyperacusis boards...even though I don't have H, I should really be here.

I wanted to share some informatin with all of you. But first a little background. I get the same thumping from high-pitched sounds. My neurotologist has seen my ear drum move.

I am going in tomorrow to do botox for the tt. My ents say they can botox through the soft palate since the tt MUSCLE runs all the way there and then connects later in the inner ear to the tendon. But they tell me that it is probably my stapedial, since this responds to sound more than the tt. Another doc tells me that both are involved. But Kemper, you say that your docs feel that it is the tt that is reacting to sound?

I will let all know if this works for me.

Joe