Auditory Nerve Section

[RCP1]

So it's come to crunch time.

I am seriously considering having the auditory nerve erve cut to my left ear.

In the morning my tinnitus is nearly silent it only wakes up when noise is present.

Without the presence of external stimuli I am confident that this procedure could quieten down the tinnitus in my case.

It's the role of the dice with a 45% chance of making it better I believe and that's for regular tinnitus so it must be greater for highly noise Reactive Tinnitus.

I will be making my case to the surgeon after Christmas. I've had enough of this life - Time to roll the dice.

I've got nothing to lose at this point as I'm already done...

 

[Don Tinny]

Why won't you wait to try MuteButton? I read that you are from Ireland. I assume you think it will not work, but...

 

[jay777]

It's the role of the dice with a 45% chance of making it better I believe and that's for regular tinnitus so it must be greater for highly noise Reactive Tinnitus.

Show me where you get the 45% rate from?

I've been trying to have it cut in the UK but have been told from GP and UCLH that no one will carry out the procedure.

 

[RCP1]

Show me where you get the 45% rate from?

I've been trying to have it cut in the UK but have been told from GP and UCLH that no one will carry out the procedure.

The 45% was from statistics from @Dr. Nagler - An eminent Tinnitus Specialist. He quoted them a couple of years back. I think the 45% was for an improvement.

I am disheartened that no-one in the UK will carry it out. That doesn't bode well for me then.

 

[Benoves]

Tomorrow I will take some time to reply mate. How long have you had the reactive tinnitus? It can improve a lot. 14 months ago I couldn't even stand the noise of an electric toothbrush 10 meter away with a door between. I took 9 long months to start improving. For 9 months it was getting worse before it started to get better.

 

[RCP1]

Tomorrow I will take some time to reply mate. How long have you had the reactive tinnitus? It can improve a lot. 14 months ago I couldn't even stand the noise of an electric toothbrush 10 meter away with a door between. I took 9 long months to start improving. For 9 months it was getting worse before it started to get better.

I've had reactive tinnitus for 4 years. Since onset. Silent at night and loud during the day - Never habituated - Just accepted the parameters - Now it's super reactionary... Unlivable in my opinion and that's what I'll be telling my consultant. Private system in Ireland slightly different to the UK and I will be saying that this is done or I will jump off liberty hall... @Benoves thank you for your response.

 

[RCP1]

Anyone had an auditory nerve section on the boards? Anyone know anyone who had it done?

 

[GregCA]

It doesn't sound like a great idea to me.

 

[RCP1]

No it's not a great idea - It's the last idea. Last roll of the dice before I exit the casino. Would you suggest I don't try it and just kiss my kids goodbye and head off down the motorway at 200 km/hr.

My tinnitus is completely silent at night - A weird tinnitus noise is the only thing that touches it - Take away noise...

I'm only 1 man. It doesn't have to work for everyone, just me.

 

[Lane]

I've got nothing to lose at this point

Is that for sure? I'm really curious if there's a track record of tinnitus not getting worse after such a procedure. -- All the best to you if you go forward with this!

 

[RCP1]

Is that for sure? I'm really curious if there's a track record of tinnitus not getting worse after such a procedure. -- All the best to you if you go forward with this!

No it's about a 50/50 chance of getting out of hell. I am fully aware it could get worse and if it does I am where I am right now - Over the tipping point!! Once you're over the tipping point... you're over the tipping point... And that's it.

That said I still have to get agreement to do this... There's many looking at this saying - no chance they'll do it...

I've looked at the stats and it's not that bad in terms of odds.

 

[Kappdog]

Have you tried everything? Like every anecdotal success story etc?

 

[GregCA]

No it's not a great idea - It's the last idea. Last roll of the dice before I exit the casino. Would you suggest I don't try it and just kiss my kids goodbye and head off down the motorway at 200 km/hr.

No, I'd suggest you hang in there and manage your tinnitus given its particular characteristics. Specifically, from your own words:

My tinnitus is completely silent at night - A weird tinnitus noise is the only thing that touches it - Take away noise...

...and...

In the morning my tinnitus is nearly silent it only wakes up when noise is present.

Which means that if you manage to keep the noise "out of the ear" (let's say, with ear muffs or the like), you should be able to enjoy longer periods of silence, perhaps just as silent as with nerve sectioning without the irreversibility.

Also, the fact that you do have periods of silence means there are conditions in your body such that your tinnitus disappears, which means your body is able to go back to silence. That's fairly positive.

That's how I would go about it.

Good luck!

 

[JohnAdams]

So it's come to crunch time.

I am seriously considering having the auditory nerve erve cut to my left ear.

In the morning my tinnitus is nearly silent it only wakes up when noise is present.

Without the presence of external stimuli I am confident that this procedure could quieten down the tinnitus in my case.

It's the role of the dice with a 45% chance of making it better I believe and that's for regular tinnitus so it must be greater for highly noise Reactive Tinnitus.

I will be making my case to the surgeon after Christmas. I've had enough of this life - Time to roll the dice.

I've got nothing to lose at this point as I'm already done...

Please don't. You've made it 4 years. We all know it sucks. Just wait a while longer and see what Frequency Therapeutics and others do.

 

[spedgas]

No it's not a great idea - It's the last idea. Last roll of the dice before I exit the casino. Would you suggest I don't try it and just kiss my kids goodbye and head off down the motorway at 200 km/hr.

My tinnitus is completely silent at night - A weird tinnitus noise is the only thing that touches it - Take away noise...

I'm only 1 man. It doesn't have to work for everyone, just me.

I'm curious about why it's completely silent at night. That's terribly interesting.

 

[RCP1]

@GregCA

This is genuinely good advice Greg.

For 4 years I had a plug in my ear 24/7. It worked nicely. Now the sound is too much and I can't plug anymore.

I had it so good and now its gone forever...

I'm curious about why it's completely silent at night. That's terribly interesting.

Tell me about it... Bliss at night hell during the day...

 

[Lane]

Tell me about it... Bliss at night hell during the day...

Could it be possible something's going on in your neck? Perhaps it's creating pressure on your nerves when in an upright position causing tinnitus, and the pressure is relieved when you lay down? -- Just a thought.

 

[GregCA]

This is genuinely good advice Greg.

For 4 years I had a plug in my ear 24/7. It worked nicely. Now the sound is too much and I can't plug anymore.

What do you mean by "the sound is too much"?

Tell me about it... Bliss at night hell during the day...

Have you considered that perhaps it's a change in position that exacerbates your issue? Perhaps, as @Lane mentioned, there's something going on with being upright. For me, laying down is the position that helps bring up the lower frequency piece of my orchestra.

Finally, have you gone down the diagnosis path following this flowchart? https://www.tinnitusresearch.net/images/files/migrated/TRI_Tinnitus_Flowchart.pdf

 

[Lane]

For me, laying down is the position that helps bring up the lower frequency piece of my orchestra.

Hi @GregCA,

Lately, alot of my thinking about tinnitus centers around what I'm learning about craniocervical instability (CCI). Below is a snippet from a fairly lengthy blog by a young man with severe ME/CFS who traced most of his symptoms to CCI. The blog gives numerous examples of how various slight movements are enough to trigger profound changes in the brain and body. It would not surprise me in the least that tinnitus could very easily be affected by it.

I think his blog would be a fascinating read for anybody interested in the mechanics of the neck and head (@Greg Sacramento), and how it can affect so many things. It's also a remarkable testament to the human spirit. BTW, he had surgery to correct his CCI, and is steadily regaining his normal health.
.............................

I poured over journal articles for weeks, analyzing the information, ruling out possibility after possibility. I was frenetic and running on fumes, as I sensed that I soon wouldn't be able to research at all. I finally came across a condition known as craniocervical instability (CCI).

I learned that CCI occurs because the ligaments of the craniocervical junction (where your skull meets your first vertebra) become too lax. Ligaments are made up of connective tissue, specifically collagen. Without tight, functional ligaments, the skull and upper spine become unstable/too mobile. This excess motion compresses neurological structures, resulting in cranial settling and brainstem compression, causing autonomic and other neurological symptoms.

I also learned that CCI very often occurs with atlantoaxial instability (AAI), instability between the first and second vertebrae. AAI would explain my near loss of consciousness when turning my head to the right. CCI/AAI accounted for all of my new symptoms, just as the ICC-ME definition had exactly matched all of my symptoms years earlier. Eureka!

 

[DebInAustralia]

So it's come to crunch time.

I am seriously considering having the auditory nerve erve cut to my left ear.

In the morning my tinnitus is nearly silent it only wakes up when noise is present.

Without the presence of external stimuli I am confident that this procedure could quieten down the tinnitus in my case.

It's the role of the dice with a 45% chance of making it better I believe and that's for regular tinnitus so it must be greater for highly noise Reactive Tinnitus.

I will be making my case to the surgeon after Christmas. I've had enough of this life - Time to roll the dice.

I've got nothing to lose at this point as I'm already done...

I remember you. Did you do TRT at one point?

5 years for me. Loud tinnitus, highly reactive, hyperacusis, awful spikes etc ...

I received adipose derived stem cells last year in Mcquarie Stem Cell Clinic end of May 2017 for severe joint pain associated with Lyme disease (not tinnitus). I say this because I never expected the stems to help my tinnitus.

One of my noises (engine noise) has completely disappeared (my tinnitus orchestra was consistent), my hyperacusis (reactivity) was quite bad - has improved dramatically. I was starting to habituate at the time I received the stems, so I can't say with absolute certainty how much of this is due to the stems, but I can say that my tinnitus and associated spikes with hyperacusis have dramatically improved after 5 long years of suffering.

The other thing I would consider for the reactivity is LDN (low dose naltrexone). Again, not advocating this as a cure, but as you say, if you've got nothing to lose, why not try this non invasive drug first? If your symptoms are in any way related to inflammation, then perhaps the LDN will help tweak your immune system.

Have you ever trialled steroids as a little experiment? I know of 3 people, with chronic tinnitus, who have much reduced tinnitus when on them... might give you a hint as to what is going on?

Something of interest: I know a girl who was born with a congenital hearing loss, with subsequent tinnitus. Later in life, she suffered a closed head injury, which robbed her of any remaining hearing and her TINNITUS. So yes, she sits in silence, free from tinnitus, but is completely deaf. Now she faces the conundrum of considering a cochlear implant to restore her hearing, but has been told she may be risking being re acquainted with her tinnitus.

What am I getting at? I understand the suffering associated with severe tinnitus, as I have been there myself. I have entertained exiting this life because of the severity of my tinnitus, hyperacusis and spikes, which were so debilitating that I felt helplessly trapped inside my head 24/7. However, I would think long and hard about severing your auditory nerve. I know suffering can lead us to such depths of desperation that we are prepared to consider taking risks, that may be irreversibly detrimental. However, there is no turning back from this procedure.

Feeling fed up. I know that feeling too - all too well.

You may not be aware of this, but the tinnitus researchers at the University of Pittsburgh have been awarded a $2 million grant from the US Department of Defense to further develop RL-81.

Others have probably mentioned that MuteButton (I think) will be available next year?

Please hang on ... XXX

 

[RCP1]

@DebInAustralia

Hi Deb - Thanks for the response - I remember you too - Yes I did TRT and was happily habituated for 4 years or so.

How it can all change in the blink of an eye...

Basically I realised early on that I had extremely noise reactive tinnitus...

I spiked for 3 weeks cause I heard a hand drier going off 10 meters away for 1 second.

I spiked for 6 weeks cause there was a loud bang 100 meters away.

I have spiked because I was in a silent room and the ear reacted to the fan of the computer - 2 week spike.

So I plugged the ear and it worked...

Unfortunately now it is going blasting 24/7 and reacting so I am in probably the hardest place a tinnitus person can be.

C'est la vie

Thanks for the advice.

Hence my desire for cutting the auditory nerve - it may destroy my balance but I have no other option.

I can't mask it as it reacts to everything so the only thing I can do is stay in a quiet room by myself....

For an extremely social person who is always out and about personally I would rather just say thanks for the 44 years.

And see ya later.

Thanks for listening guys.

R

 

[Krolo]

I would say that my tinnitus is loud as fuck and basically been contemplating ending it all but I figured I would try every single drug possible to see if it alleviates it. Started with Keppra 2 days ago and in some weird way it has settled the reactivity a bit. And my ears literally cringed at the lowest sound possible and tinnitus spiked.

It also was crazy high when in silence. Basically was winding up at that time. I have no idea if Keppra is what is doing it but I would really explore other options before you try this procedure. I am having that as a last resort item if all else fails.

 

[Benoves]

@RCP1 I will reply later but wait at least for the results of clinical trials that are coming soon. Some very promising. Give yourself 6 more months. How would you feel if your auditory nerve was cut and promising results came out a couple of weeks later. I know you're suffering and I understand your thoughts but be smart this time because you are.

You have already survived for one year and I am sure you can do one more.

Best wishes

 

[RCP1]

I would say that my tinnitus is loud as fuck and basically been contemplating ending it all but I figured I would try every single drug possible to see if it alleviates it. Started with Keppra 2 days ago and in some weird way it has settled the reactivity a bit. And my ears literally cringed at the lowest sound possible and tinnitus spiked.

It also was crazy high when in silence. Basically was winding up at that time. I have no idea if Keppra is what is doing it but I would really explore other options before you try this procedure. I am having that as a last resort item if all else fails.

I've heard that Keppra can combat reactivity - Let me know how you go friend. Sounds hopeful.

 

[jjflyman]

So it's come to crunch time.

I am seriously considering having the auditory nerve erve cut to my left ear.

In the morning my tinnitus is nearly silent it only wakes up when noise is present.

Without the presence of external stimuli I am confident that this procedure could quieten down the tinnitus in my case.

It's the role of the dice with a 45% chance of making it better I believe and that's for regular tinnitus so it must be greater for highly noise Reactive Tinnitus.

I will be making my case to the surgeon after Christmas. I've had enough of this life - Time to roll the dice.

I've got nothing to lose at this point as I'm already done...

I'm truly sorry that tinnitus has pushed you to this point. Tinnitus is a terrible thing and living with loud tinnitus can be very difficult, if not impossible. I have often wondered if severing the nerve would end the tinnitus. Please keep us posted on you decision, and on your results. I am praying for you, like I pray for all the sufferers of this terrible condition.

 

[Lane]

but I have no other option.

Hi @RCP1,

Not to be argumentative in any way, but it seems a number of pretty good sounding options have been presented to you in this thread. I might just mention also, that I've noticed I generally make bad decisions when I'm feeling a sense of desperation. I make better decisions when I'm feeling much more calm and collected, allowing me to more objectively see the pros and cons of a given situation. -- Best!

 

[DebInAustralia]

I've heard that Keppra can combat reactivity - Let me know how you go friend. Sounds hopeful.

And get on nicotinamide riboside to protect your ears. Can you start TRT again? What about LLLT?

 

[Arseny]

If you are feeling very desperate you can try intravenous Lidocaine 100-200 mg. It's very dangerous, but it will give you a day or two of relief to have a clear mind regarding your situation.

 

[Tinniger]

I doubt it's possible to find a neurosurgeon today who cuts through the auditory nerve because of tinnitus.

This 45% improvement comes from an ancient and questionable publication:
https://www.ncbi.nlm.nih.gov/pubmed/6915835

In addition, in my opinion there should also be reversible methods (with local anaesthetics) to simulate the effect of auditory nerve severance.

 

[StubbyJ]

Craniocervical instability (CCI)

I'm really starting to think there's something to this. I mention this OP as you and I have similar symptoms. I'm in no way telling you what to do but I think you should consider the following in light of drastic measures.

I've started working on this area (cervical) with stretching my neck and back but most importantly using a foam cervical wedge to re-curve my neck. I can honestly say I've seen an improvement in both T and H with most improvement in T. I have slept for month straight without masking and during the day there are times where it's there, but in my world, existing at a 1 and only noticeable when I'm not concentrating on something.

Backing this up:

1. In the past, and still today as I awaken my T and H symptoms slowly "turn-on" within an hour of waking. It's like clockwork...a wispy, low-level wind-like tone to a high pitch tea kettle just I pass a business park near my house an hr. later.

2. Since beginning my routine my posture has changed drastically taking pressure off my neck. X-rays show a -3 degree pitch (forward) before rehab and now I'm at a +13. I think 30-something is optimal. I should know this.

3. I'm getting tingling sensations within the muscles near/on the sacrum. One day it was if someone was holding 9 v battery to the area. I hope this is a good thing. I know this area was underdeveloped due to abuse over the years...maybe it healing. I guess this aspect is TBD.

4. In concert, I've recently begun the following treatment http://www.acacd.com/auriculotherapy.php . Many believe forms of this to be a bunch of B.S., however, what differentiates this from TCM is the use of a specific frequency in the signal. I won't go down the "rabbit hole," but aside from this discussion I believe frequency to be a major aspect of the human condition. I do think this has helped greatly, or should I say my improvement occurred at the same time of treating my brain stem opposed to using other protocols prior. I, as many others held doubts but figured it's worth a try. I won't focus on the T aspect but rather a point called the tranquilizer point/protocol as because of this, I know without question something is going on. Long story short, after treating the tranquilizer point I felt as if I had been drugged with a sedative...no question about it. I'm a hard guy to convince of this stuff, but after the aforementioned I'm now really hesitant in writing-off any sort of treatment. T

I hope this helps and good luck. Have you been watching the U of M study?

Stubby