Botox Injection Into Middle Ear Muscles Without Cutting the Eardrum? Possible?

[mermaid]

Hi, everyone! I'm newbie on the board and I want to send warm greetings to you all! Besides I want to apologise in advance for my bad English. My grammar sucks, I hope you'll forgive me ;-) Well, my problem is middle ear myoclonus in right ear (maybe it is Tonic Tensor Tympani Syndrome). I have been struggling with this issue for about three years. Until now stays this problem unresolved, though I have been trying almost everything – I mean: TRT (white noise, generators etc.) and neurological pills like Gabapentin, Klonopin, Sirdalud (Tizanidinum), Iporel and Segan, supplements like vitamins and magnesium. All these medicaments are somehow muscle relaxants but I have almost no benefit from them. Now I'm taking Valium (7 mg/day) and I have a little bit relief from it. It reduces my biggest spasms around the ear but it isn't able to reduce the vibrations of my eardrum. I'm aware no pill will be able to cure my myoclonus and I want to inject these muscles with botox, but the problem is I don't exactly know which one of these muscles is affected – I know it could be: tensor tympani muscle, stapedius muscle, tensor veli palatini or levator veli palatini. No ENT or neurologist saw a movement of my soft palate so I think only tensor tympani and /or stapedius muscle are spasming/twiching. I want to add that since my myoclonus began, I am able to move my eardrum in affected ear voluntary and this is strange. When my ENT saw that, she said it can't be tensor tympani because in her opinion no human being is able to move this muscle voluntary and it must be some other muscle… But she doesn't know which one…And now my question to you guys: did somebody of you have the middle ear muscles injected with botox and how does this procedure look like? Must be the eardrum cut in order to reach the middle ear muscles and inject them by surgeon or can the surgeon get the botox injection into the roof of the mouth near the eustachian tube and that's enough to paralyze the tensor tympani and stapedius muscle? To be honest, I'm totally scared of cutting my eardrum and I want to avoid this and simply botox my roof of the mouth, because it isn't so serious operation but I don't know if it will solve my problems. Can someone answer my questions and doubts? I will be very grateful. Have a nice day!

PS. I wonder if my problems are somehow related to the atypical trigeminal neuralgia because I have a burning sensations around my ear, sometimes on my cheek and temple. My neurologist ruled it out but I generally don't trust the doctors because most of them I met were totally ignorant of the weird and atypical ears issues…

 

[PaulBe]

The tensor tympani can be injected but the Stapedius is too small. I saw mention of a procedure once where someone had sort of compress for topical application of botox to the stapaedius. The muscle tissue can absorb from outside pretty well. The eardrum does need to be moved to allow access, simply put its the only viable way in. Doing so allows the muscles to be seen, and the myoclonus to be identified. I think the lifting of the drum is the least of the issues involved.

 

[Chelles]

Hey I have the same middle ear myoclonus in both ears but mostly in my right ear. I've had it for about six months, is yours 24/7? I've tried muscle relaxers but they don't help. As far as I know they do need to cut the eardrum in order to access the muscles and like you this scares me too!. Like you I also feel like I can move the muscles inside my ear and it feels very odd!

 

[mermaid]

Chelles - yes, my is 24/7 and I doubt mine is related to hyperacusis, because I have it in complete silence too. I had some degree of hyperacusis once in the past but then my hyperacusis improved and finally went away. Now I am even able to listen to the music on headphones without feeling any discomfort. What caused your myoclonus? In my case it was an acoustic shock, I think so. My interlocutor screamed very loud into my ear during our mobile phone conversation and since then my myoclonus began. I think this incident caused my problem.

 

[Chelles]

@mermaid mine isn't caused by h either like you said it happens in complete silence too. I don't know what caused mine I have a feeling it has to do with my jaw muscles and maybe neck muscles??? It's very hard to figure out since most doctors aren't familiar with it. Mine isn't 24/7 it's intermittent and I get relief when I stick my finger in my ear. I got some help from magnesium but not much have you considered surgery?

 

[mermaid]

Yes, I'm thinking about surgery, but this is the last thing I want to do. In my opinion it's too serious procedure and I want to avoid it. The tensor tympani and stapedius muscles protect the ear from loud noises and without them (because during the surgery they are cut) becomes the ear somehow "injured" (if you know what I mean). It isn't the same ear as before. I think it would be very difficult for me to stand it mentally. I'll feel "wounded", "damaged"... This is the first thing and the second thing is, that in my homeland it is very difficult to find a doctor who would be willing to do this kind of surgery. The doctors I met were rather ignorant of my case, though I searched for the help among really many specialists. Simply, the middle ear myoclonus is so rare disease that there are almost no doctors who've ever even heard about that condition...So sad but true...

 

[Chelles]

@mermaid I def agree surgery is a last resource only!!! I'm in the U.S and it's so hard to find a doctor that will perform the surgery or treat this condition. I know someone here who has the same condition (there aren't many of us) and she has found relief through a new diet and supplements. I'm going to try to tag her here @RileyGirl.

 

[mermaid]

@Chelles Well, in my country it is possible to inject with botox the muscles of soft palate and that's no problem. There are clinics which practise that kind of procedure but it's all about soft palate muscles and not middle ear muscles! What's a bad luck! What's a paradox - the medicine is so advanced, doctors are able to implant the cochlear implants, to do so many surgeries such as stapedotomy etc., and they still have problems with threatment such silly thing as middle ear myoclonus! Lately I have wondered if my problem is somehow related to adenoid. I have to check if I have my adenoid still existed or not because maybe that generates the problem ...
PS. Are you in contact with @RileyGirl? Is she now completely healed?

 

[RileyGirl]

Hi! I am not healed yet, but I have slight improvement. I have the same kind as @Chelles has. I am on so many supplements and methods but today I am discouraged because my improvement is so slight. I did some more research and found a supplement I did not try yet -Vinpocetine. I saw it on this site and so I did a little research My local health food store has it, so I'm going to add it to my arsenal of supplements. I also sent away for a hair sample analysis to see what I am lacking and will supplement with those as well. This is tiring ad annoying!

 

[Chelles]

@RileyGirl I had almost 2 good weeks I started getting happy thinking it was gone and then out of nowhere it started again I'm so sick of all of it and now everytime I yawn my face and ear hurts!

 

[RileyGirl]

Ohhh And for the first time mine hurt yesterday and not from the ear plugs I'm sick of it too! Well, I bought the Vinpocetine and I'm going to combine it with Gingko Biloba. I will add this to my long list of things. I'm anxious to get my hair analysis done to see if I'm lacking in any nutrients or if I have a toxic load of something in me. When I bought the Vinpocetine, the health food store owner told me to drink Braggs Apple cider vinegar in water several times a day to keep my body less acid and more alkaline. He said acidity in the body will cause muscle spasms in any of the the muscles. So, maybe I'm too acid? I will try it! He said it can be mixed with water, lemon juice and natural honey, and drink it a couple of time a day and it should help spasms in any muscle. But, he said to keep at it, don't just do it for a week. It takes awhile to gat alkaline. And, to check on a list of what foods are most acidic and to avoid them if possible when I have a flare-up, or to avoid a spasm (which is all the time for the past 3 years now) And eat more alkaline foods. So, I'm going to print them out and try that!

 

[Chelles]

@RileyGirl I wonder what's causing the pain?.... Do you get other muscle spasms throughout the body? I do especially in the summer idk what's causing it but I'm sick of it.

 

[RileyGirl]

Yes, I get them in my neck and legs - they're horrible. But, now I hoping that it's all related and that going more alkaline will help my ear, neck and legs. Maybe the pain is our ear muscle spasm pain like when we have pain with our other muscles?

 

[RileyGirl]

Oh my gosh, that was the most disgusting thing I ever drank!

 

[Chelles]

@RileyGirl that sucks that it doesn't taste good but just think if it helps it's worth it!!! I also think the pain in my ear is from the muscle cramping sometimes it hurts my jaw and side of my face too. I'm hoping this goes away for all of us soon!.

 

[mermaid]

Hello girls I have a new trail to determine what could be a possible cause of my myoclonus/burning pain in my ear. Three years ago I did MRI of my brain and it showed a 12/14 mm cyst of pineal gland. The doctors I met didn't connect my symptoms with the cyst of pineal but as I've recently written - I generally do not trust every word from doctor's lips because so far they haven't helped me much. I've made a small research and I've discovered that such cyst of pineal can press and stimulate the nerves such as trigeminal ganglion or otic ganglion (the nerves of pineal) which are connected to the innervation of the middle ear muscles (wikipedia, maybe not the best source to gain knowlegde but it's useful though ) and now I wonder if it can be somehow related to my disease. My pain/myoclonus is permanent, because something still presses on the nerves and maybe that's why it doesn't react to almost any medicament - for me it seems logic What do you think about it? Have you ever made a MRI scan of your brain?

 

[Chelles]

@mermaid that's interesting...is your myoclonus in both ears? Did you have the cyst removed? I've never had an MRI my doctor never suggested one.

 

[mermaid]

No, my myoclonus is only in my right ear. And no, I didn't have my cyst removed. The doctors were of the opinion that there is no need to do that kind of surgery. They have never connected my symptoms with this cyst, though I suggested them that possibility. But they were all ENTs or neurologists. Maybe should I search for a good neurosurgeon, who is willing to treat my case seriously...

 

[Chelles]

@mermaid I suggest you seek the opinion of a neurotologist they specialize in neurological disorders in the ear. My case is very rare because I have it in both ears however they don't have the same twitching rhythm. When both ears are spasming it drives me nuts!!.

 

[mermaid]

@Chelles - I know your pain! My ear spasm drives me nuts too! Have you ever experienced a tooth pain on the side of spasming ear? Two of my teeth (6 and 7) on the side of my twitching ear hurt and I wonder if it can be caused by the nerve irritation from my spasming ear. I think the nerves of teeth and ears can be connected with each other, aren't they? It drives me crazy and I'm going to make an appointment to the dentist soon. Regarding the neurotologist who specialize in neurological disorders in the ear you've written about - I think it will be quite difficult for me to find someone who connects these two specializations, maybe should it be an oto-surgeon, who makes ear surgeries and is familiar with the anatomy and innervation of ears, face, jaw etc. ...? Maybe, maybe... but I'm sick and tired of seeking new doctors, who maybe will be able to help.

 

[Chelles]

@mermaid yes I get tooth pain also, plus I have impacted wisdom teeth that may be causing my spams.

 

[mermaid]

I have my wisdom teeth removed, but the ear spasm remaines the same as it used to be.

 

[mermaid]

When I mentioned acoustic shock I meant that: http://www.hyperacusis.net/hyperacusis/acoustic+shock+disorder/default.asp
TTTS as a result of an acoustic shock disorder...

 

[mermaid]

The tensor tympani can be injected but the Stapedius is too small. I saw mention of a procedure once where someone had sort of compress for topical application of botox to the stapaedius. The muscle tissue can absorb from outside pretty well. The eardrum does need to be moved to allow access, simply put its the only viable way in. Doing so allows the muscles to be seen, and the myoclonus to be identified. I think the lifting of the drum is the least of the issues involved.

@PaulBe - I don't know if I've understood you in the right way - in order to paralyze the tensor tympani muscle it's enough to inject with botox only the roof of the mouth (palate) without cutting the eardrum but in case of the stapedius muscle must be the eardrum cut to access this muscle, right?

 

[Chelles]

I think the botox shot for the roof of the mouth is for palatal myoclonus not sure it would work for the tensor tympani muscle.

 

[mermaid]

I think the botox shot for the roof of the mouth is for palatal myoclonus not sure it would work for the tensor tympani muscle.

Yes, I'm afraid it wouldn't and that sucks! Life is a bitch! I'm so sad. I'm so tired. F...k it all!

 

[Chelles]

@mermaid I'm also super frustrated I wish the botox shot didn't have so many risks I wouldn't mind going in that direction if it was to work with minimal risks

 

[PaulBe]

No Mermaid, I said the eardrum has to be lifted, which means to incise a corner and move it, like opening a curtain after you've cut the desired opening. The practitioner needs to visualize the area and identify the structures and to do so has to get past the drum. I think Chelles may be right about palatal myoclonus, but that is pretty rare (but then they tell us hyperacusis is rare don't they). I think any procedure involving the TT or the Stap. requires that they be seen directly. There is no room for "Oops" when paralyzing or cutting muscles in that area.

 

[mermaid]

@PaulBe - hi, a big thanks for the answer! Can I ask you one more question, cause you seem to be familiar with the anatomy of ear - well, as I've lately written in this thread since my myoclonus began I'm able to move my eardrum voluntary. I was convinced I can move my tensor tympani muscle voluntary, but my ENT said it's impossible because no human being is able to move the tensor tympani muscle voluntary and consciously, whereas wikipedia claims following:
Tensor Tympani Muscle
Voluntary control

Contracting muscles produce vibration and sound.[3] Slow twitch fibers produce 10 to 30 contractions per second (equivalent to 10 to 30 Hz sound frequency). Fast twitch fibers produce 30 to 70 contractions per second (equivalent to 30 to 70 Hz sound frequency).[4] The vibration can be witnessed and felt by highly tensing one's muscles, as when making a firm fist. The sound can be heard by pressing a highly tensed muscle against the ear, again a firm fist is a good example. The sound is usually described as a rumbling sound. A very small percentage of individuals can voluntarily produce this rumbling sound by contracting the tensor tympani muscle of the middle ear. The rumbling sound can also be heard when the neck or jaw muscles are highly tensed as when yawning deeply. This phenomenon is known since (at least) 1884 (cf : Tillaux Paul Jules, Traité d'Anatomie topographique avec applications à la chirurgie, Paris Asselin et Houzeau publishers (4°ed. 1884, p. 125 )). source: http://en.wikipedia.org/wiki/Tensor_tympani_muscle).

Who is right? When not tensor tympani, which muscle can I move voluntarily? Tensor veli palatini or levator veli palatini?... Have a nice day!

 

[Chelles]

@mermaid I wish I knew the answer to this as I feel like I can also control the movement of the muscles in my middle ear. I never had this before until the myoclonus started.