Surgically Cutting the Tympanic Muscle in an Effort to Help Severe Noxacusis (Pain Hyperacusis)!

[grate_biff]

Ah shit, sorry to hear that. Have you gotten any better over time? Noxacusis is a complete nightmare. Mine only gets worse. I am pretty much in searing pain all the time.

It really is a nightmare. It has consumed my life for many years. Total isolation. No interaction with anyone except my Dad.

As my benzo withdrawals are diminishing, I am getting a little better.

 

[Brian Newman]

It really is a nightmare. It has consumed my life for many years. Total isolation. No interaction with anyone except my Dad.

As my benzo withdrawals are diminishing, I am getting a little better.

Damn. I'm sorry to hear. I have been extremely careful for over 6 months and set it off from stupid shit like going to the grocery store or driving or watching TV. It makes no fucking sense man. Worst thing ever. Nothing compares to it.

You haven't gotten any better from being in isolation? I just keep setting it off because the isolation is driving me crazy.

I'm gonna try Silverstein surgery and see if it helps at all. If not, I'm cutting the nerve. Not gonna live like this man. I refuse. Not gonna sit in silence for the rest of my life.

 

[grate_biff]

It makes no fucking sense man. Worst thing ever. Nothing compares to it.

It really is. It's also so hard to get others to understand how debilitating it is. Most people just do not get it.

You haven't gotten any better from being in isolation? I just keep setting it off because the isolation is driving me crazy.

Not better, but avoiding sound makes it easier to live. I'm lucky to live in a cellar. My only pain comes when the toilet is flushed upstairs

After a long time being in benzo withdrawals I'm hoping things will ease up a little. I can feel my sensitivity is slightly better.

I'm gonna try Silverstein surgery and see if it helps at all. If not, I'm cutting the nerve

All the best and good luck to you.

Which nerve are you going to cut? The hearing nerve?

 

[Brian Newman]

It really is. It's also so hard to get others to understand how debilitating it is. Most people just do not get it.

Not better, but avoiding sound makes it easier to live. I'm lucky to live in a cellar. My only pain comes when the toilet is flushed upstairs

After a long time being in benzo withdrawals I'm hoping things will ease up a little. I can feel my sensitivity is slightly better.

All the best and good luck to you.

Which nerve are you going to cut? The hearing nerve?

Yep. First I am going to have oval window reinforcement on both ears and reinforcement of the stapes. I am also going to have them do some investigating to see if anything else is wrong.

Cutting the auditory nerve is my last resort. My noxacusis gets better really quick, it's just so easy to set off, I am going to try to go another month before surgery and see what happens. Because this is just ridiculous. I don't mentally understand how, if I am wearing foam earplugs, if I go to the grocery store I'll leave me in terrible pain. Lol makes no fucking sense.

It's only gotten worse because I have a life, stuff to do, have to feed myself. Maybe if I stayed in a room for 6 months things would be different. I have it much worse because I also have a perilymph fistula. Because of that I can't workout at all, can't exercise, nothing, or my loudness hyperacusis gets severe, and my distortions get horrible.

I even have a damn home gym that's nice and quiet. But my stupid ass head and ears won't let me. I can tell you this, exercise helps my noxacusis like crazy. If I could workout still, I would be working out 10 hours a day. I would not even be on these forums. Too much shit going on with my ears, man it's annoying.

 

[GoatSheep]

It did nothing!

Sorry to hear this man. What hope do we have when surgeries fail. I had a similar experience with hoping osteoma removal would help or eliminate my tinnitus.

Did you have any complications from having it removed? Which ear did you do? Noticing any differences between your ears now?

 

[grate_biff]

Did you have any complications from having it removed? Which ear did you do? Noticing any differences between your ears now?

No complications. Did my right ear, where I also have tinnitus. It did nothing, good or bad.

I'm a firm believer in Paul Fuchs model now, in my case. It's all in the cochlea. And my fucked up benzo-brain makes it way worse.

I'm officially off of it, but I keep on relapsing because of the pain, taking 40-50 mg Diazepam over 2-3 days, excused in my mind it's better than suicide and I get huge relief, then my intellect takes over and I feel regret. Pain comes back and restarts the cycle. I'm so deep in that shit, you would not believe it. I'm the king of fucking kindling. On and off benzos for 30 years I was finally free from it and swore never to touch it again. Then crash, boom, bang and my ears got shattered... And guess what helped?

Even my doctor and the wards that treats addiction wants me on benzo for life... But I want to know if my noxacusis is livable with a healthy CNS. I have forgotten what it's like to have one.

Sending my love to everyone under similar circumstances. I know I'm not alone...

 

[Daniel Lion]

No complications. Did my right ear, where I also have tinnitus. It did nothing, good or bad.

I'm a firm believer in Paul Fuchs model now, in my case. It's all in the cochlea. And my fucked up benzo-brain makes it way worse.

I'm officially off of it, but I keep on relapsing because of the pain, taking 40-50 mg Diazepam over 2-3 days, excused in my mind it's better than suicide and I get huge relief, then my intellect takes over and I feel regret. Pain comes back and restarts the cycle. I'm so deep in that shit, you would not believe it. I'm the king of fucking kindling. On and off benzos for 30 years I was finally free from it and swore never to touch it again. Then crash, boom, bang and my ears got shattered... And guess what helped?

Even my doctor and the wards that treats addiction wants me on benzo for life... But I want to know if my noxacusis is livable with a healthy CNS. I have forgotten what it's like to have one.

Sending my love to everyone under similar circumstances. I know I'm not alone...

Ahh bro, I miss your old Avatar of you on the tractor.

Don't beat yourself up over the benzos, do what you need to do. Our situations are not normal and never will be.

Big hugs buddy, that kid in the photo is still there, we don't lose our essence - a beautiful soul full of compassion.

Miss you mate,
D XXXXXXXX

 

[Taw]

@grate_biff, did you try other medications for nerve pain, besides benzos? Some get relief from Lyrica, Cymbalta, etc...

 

[grate_biff]

Ahh bro, I miss your old Avatar of you on the tractor.

Changed it back my friend.

Missed you too

Don't beat yourself up over the benzos, do what you need to do. Our situations are not normal and never will be.

You are SO right.

did you try other medications for nerve pain, besides benzos? Some get relief from Lyrica, Cymbalta, etc...

Tried my share of meds. Nothing but benzo works on my noxacusis.

 

[StoneInFocus]

Cutting the auditory nerve is my last resort.

Are you still thinking about doing this?

Correct me if I 'm wrong, but I have been searching around the internet and I have found little theoretical arguments that support the notion for or instances of pain hyperacusis being cured by this procedure.

Conversely, I also recall the knock-out mouse study, where they genetically engineered mice to be deaf but were still able to induce hyperacusis in said mice, effectively suggesting that pain can be experienced even in the presence of no input, although I wouldn't infer that restoring input wouldn't alleviate the hyperacusis.

I don't exactly know which study @Aaron91 is talking about, but you might want to look into that.

Kind regards.

 

[David S]

I'm gonna try Silverstein surgery and see if it helps at all. If not, I'm cutting the nerve. Not gonna live like this man. I refuse. Not gonna sit in silence for the rest of my life.

Cochlear implants must be way better than cutting the nerve?

 

[Brian Newman]

Are you still thinking about doing this?

Correct me if I 'm wrong, but I have been searching around the internet and I have found little theoretical arguments that support the notion for or instances of pain hyperacusis being cured by this procedure.

I don't exactly know which study @Aaron91 is talking about, but you might want to look into that.

Kind regards.

Ugh still researching, but I have to try Silverstein surgery first, then have my Tensor Tympani cut. Then I'll try disconnecting the middle ear bones. Cutting the auditory nerve will definitely be final resort.

 

[Brian Newman]

Cochlear implants must be way better than cutting the nerve?

Well for pain hyperacusis, who knows right, it's all a crap shoot. I'm saying till a good tinnitus treatment comes out, then I'll start going crazy. I definitely don't want severe tinnitus with this noxacusis.

Not even sure cochlear implants would work, maybe?

If technology gets better I can press a button and be temporarily deaf? I don't know.

 

[Wrfortiscue]

If technology gets better I can press a button and be temporarily deaf? I don't know.

Deaf with bad tinnitus? That's rough.

 

[haha ear go eeee]

I'm trying to decide between getting my muscle cut and getting a Botox injection in my middle ear as surgery options. However, I know Botox is ototoxic, and I really don't want to make my symptoms worse.

What are the potential side effects of severing the muscle? Can it make symptoms worse as well?

 

[MindOverMatter]

Why do you consider this @haha ear go eeee? Is this in relation to TTTS?

For most people TTTS is temporary, though it may last for quite some time before it dampens or disappears.

TTTS is also commonly aggravated by anxiety and fear of noise/worsening.

 

[HighleyTall]

Yep. First I am going to have oval window reinforcement on both ears and reinforcement of the stapes. I am also going to have them do some investigating to see if anything else is wrong.

Cutting the auditory nerve is my last resort. My noxacusis gets better really quick, it's just so easy to set off, I am going to try to go another month before surgery and see what happens. Because this is just ridiculous. I don't mentally understand how, if I am wearing foam earplugs, if I go to the grocery store I'll leave me in terrible pain. Lol makes no fucking sense.

It's only gotten worse because I have a life, stuff to do, have to feed myself. Maybe if I stayed in a room for 6 months things would be different. I have it much worse because I also have a perilymph fistula. Because of that I can't workout at all, can't exercise, nothing, or my loudness hyperacusis gets severe, and my distortions get horrible.

I even have a damn home gym that's nice and quiet. But my stupid ass head and ears won't let me. I can tell you this, exercise helps my noxacusis like crazy. If I could workout still, I would be working out 10 hours a day. I would not even be on these forums. Too much shit going on with my ears, man it's annoying.

Hi @Brian Newman, did you have this surgery?

 

[momus]

I find nothing anywhere that says cutting the auditory connection would have any effect on tinnitus. I've read of people who said that it did, and I have heard of people who said it had no effect. What's missing in people's ideas on this is that tinnitus is not a sound; it is more of a feedback loop that is experienced as a sound, and it is directly connected to our brains. People who have had their inner ear permanently maligned due to Meniere's disease still have tinnitus.

I also cannot find any credible accounts of people having serious tinnitus reversed. I DID talk to a nurse in the office of the doctor who gave me tinnitus due to his insistence that I stay on the antibiotics that he prescribed. She understood how awful it is and mentioned she could not go into restaurants with open kitchens due to the noise of clattering plates. Her tinnitus apparently went away after a few weeks, and I don't know if it ever came back. I think this is a brain issue once tinnitus is established, and that's where I would be looking to find something to mitigate it.

No one knows the exact way tinnitus works, nor does anyone know for sure that if such a procedure is done, it will improve/eliminate someone's tinnitus. I've had it for over 30 years, and it can go up or down without anything at all changing in my diet or lifestyle. But I still don't give up on trying new things to help mask it, and I still keep up with the science to see if anything has changed. You never know.

 

[Brian Newman]

Hi @Brian Newman, did you have this surgery?

I did not have the surgery. I ended up getting so bad that the drive isn't even an option. The noise from the surgery and all the beeping machines would kill me.

Just sticking it out in a soundproof room.

 

[HighleyTall]

I remember waking up after an eye surgery because of a retinal detachment, the beeping machines on the side of my worst ear...

I would fly 12 hours to get a neurectomy, but I can't find a surgeon. Unfortunately, there are no private clinics in Belgium. If you can find a notable surgeon who would take my money, please let me know.