Round and Oval Window Reinforcement for the Treatment of Hyperacusis

#181
I was reading this link, trying to understand it and as far as I can see seems like perilymph fistula is an area of research that's had its disagreements in the much disputed field of otology. And it's obvious to me that Silverstein doesn't look to differentiate whether his patients have fistula or don't. Now, hyperacusis has been reported to be a consequence of fistula, if I'm not mistaken. So on the one side, it's good that hyperacusis now gets redefined to overlap perilymph fistula, but on the other shouldn't Silverstein be making sure his patients have fistula? Plus, he uses the crappy official hyperacusis questionnaire...
 
#184
My neurotologist gave me the option to have this surgery performed. He's the best in my country in the field.

I'm gonna wait and see before I make any decisions.
 
#185
#189
Mithrandir said:
What is the origin of your H ?
Click to expand...

I have no way of knowing for sure, but I've been to hundreds of concerts without hearing protection, so noise exposure is my best guess. There was no single incident I can point to that triggered it. It began with a fluttering spasm (triggered by noise) in my left ear in September 2012 when I was 23 years old. Tinnitus came a month after that, and then both steadily worsened throughout the following year.

Then in 2014 new symptoms popped up like dizziness, migraines, facial pain/numbness, among others.

1.5mg of Ativan per day helped me through 2014-2016, and for a while I thought I had seen real improvement. Benzodiazepines appear to reduce my symptoms by quite a bit. Now as I taper off benzos, my symptoms worsen with every drop in dose.

Now I'm 27 and I'll be 28 soon. No money, no education, no prospects, no hope. I'm sitting here with a crushing headache and burning ears wondering how I've made it this far, and how far I'll make it in the future.
 
#191
Mithrandir said:
Why stopping benzo if it's help ?
Click to expand...
I fear that long term use will make my situation worse. Even though they help right now, benzos are known to cause a tolerance in your body and stop working over time. The withdrawal syndrome can become protracted and permanent as well, and the length of time you've been taking the drug has an affect on this.

There is also a strong correlation between benzodiazepine use and dementia later in life.

Mithrandir said:
What do you think about TTTS ?
Click to expand...
I don't have an opinion.
 
#193
A short blurb in the December 2016 Silverstein Institute email newsletter:

Hyperacusis Research Study

Dr. Silverstein recently presented the results of 14 patients who had minimally invasive surgery for Hyperacusis (noise sensitivity) at the Glasscock National Meeting in Nashville. Eleven of the patients had a reduction in Hyperacusis symptoms. Two of the patients had exquisitely sensitive hearing that was not helped. A multi-center study is being organized to evaluate round and oval window reinforcement as a treatment for severe Hyperacusis. For more information on this Hyperacusis study, email hpatel@earsinus.com.
 
#194
HPatel may have interesting info to share. He's the one who answered a question I had some time ago but I haven't had the energy to ask him further or to insist to him to make better evaluations of his ''hyperacusis'' patients.
 
#195
lymebite said:
A short blurb in the December 2016 Silverstein Institute email newsletter:

Hyperacusis Research Study

Dr. Silverstein recently presented the results of 14 patients who had minimally invasive surgery for Hyperacusis (noise sensitivity) at the Glasscock National Meeting in Nashville. Eleven of the patients had a reduction in Hyperacusis symptoms. Two of the patients had exquisitely sensitive hearing that was not helped. A multi-center study is being organized to evaluate round and oval window reinforcement as a treatment for severe Hyperacusis. For more information on this Hyperacusis study, email hpatel@earsinus.com.
Click to expand...

14 patients? There were just 9 in study. 11 got better, 2 didnt have any effect but what happened to the last one? Ok, a multi-center study sounds good since it will hopefully be on a lot more patients, altough I guess it will only take place in one more location, the one in California.
 
#197
lapidus said:
14 patients? There were just 9 in study.
Click to expand...

I think that as time goes on, additional patients join the study and undergo the surgery, and the number of reported results increases. So we would see that reflected in the most recent results reported last month at the Vanderbilt University presentation.
 
#198
Hyperacusis Research visited Mass Eye and Ear Infirmary recently to get a tour and see what Xiying Guan was up to since he got their latest research grant. There's an article on their website:
http://hyperacusisresearch.org/hyperacusis-research-tours-meei/

In the end it says:
"Using the above concepts, Heidi described more recent work whereby a third window was introduced to force an SCD-like condition in a temporal bone. Next a reinforcement of the round window was performed (similar to surgery performed for SCD patients). This data indicates that the round window reinforcement does not reduce the effects of the third window and therefore is not supporting a model for any benefits to SCD or hyperacusis patients."

Does this mean that Silverstein's procedure doesn't work?
 
#199
Anyway the schema of hyperacusis research is bad, they forgive middle ear muscle...maybe that's what they give hyperacusis ?!
 
#200
My ENT said he would do this for me,says it's rather simple if I wanted to give it a try.Haven't done it though,I honestly don't think it will be benficial for me so I'm apprehensive about getting it done.
 
#201
lapidus said:
Hyperacusis Research visited Mass Eye and Ear Infirmary recently to get a tour and see what Xiying Guan was up to since he got their latest research grant. There's an article on their website:
http://hyperacusisresearch.org/hyperacusis-research-tours-meei/

In the end it says:
"Using the above concepts, Heidi described more recent work whereby a third window was introduced to force an SCD-like condition in a temporal bone. Next a reinforcement of the round window was performed (similar to surgery performed for SCD patients). This data indicates that the round window reinforcement does not reduce the effects of the third window and therefore is not supporting a model for any benefits to SCD or hyperacusis patients."


Does this mean that Silverstein's procedure doesn't work?
Click to expand...

Ronna Fields at Hyperacusis Sufferers facebook group says Silverstein is working on another hypothesis for H, the mobility of the stapes bone. Said he wrote a paper on it too.

When round window reinforcement was used for dehiscence, it was deemed logical nonsense by the experts in dehiscence. The suspicion was that it helped with only H, not dehiscence, because the oval window's stapes bone was being reinforced with grafts.

Other patients are coming out at Hyperacusis Sufferers saying it's worked, such as Michelle Maertens.

H being in the inner ear is probably nonsense written by the slimeball Jastreboff club, it could be all in the middle ear, either from physical movements of the stapes bone or fictitious perceptions of illusory movements that kinestheologists understand when they talk about proprioception.
 
#202
@japongus
@lapidus

Japongus is totally right, a lot of scientist & doctors follow(ed) Jastreboff (bullshit) theory just to give some (bad) help to their patients and give them a good conscience (We can do something for Hyperacusis, don't worry). But when their therapy doesn't work 'cause that's a scientifical non sense, they say to their patient "sorry, all is psychologic, we can't nothing for you, that's in your brain..."

Jastreboff hypothesis is from 90's, Klochoff discovered the mechanism of hyperacusis with pain noise induced in the 60's, 70's. In same time that's presented in the jastreboff website (tinnitus.org). Now more doctors and scientists know the Klochoff works from the 60's & 70's but they have nothing to offer so they continue to advice TRT/CBT...

Silverstein, Hyperacusis Research, Damien Ponsot, just to give some names, try new things closer to reality. Silverstein is criticized by "classical doctors" even in France by one ENT who knows perfectly TTTS and ASD, but when I gave her evidence of my improvement thanks to the surgery by a mechanic effect, she stopped criticized Silverstein 'cause we can explain why R&OWR can help people & open the middle ear permit to see bad functioning of middle ear like for Ronna Field.

You can find what is the problem with you if you search a problem...
 
#203
I asked Bryan Pollard about the above quote from the article. This was his response:

" Thanks for reading this article and catching this detail. Yes – this is what the MEEI researchers think from their data. They cannot model a reason it would help.
Patient experiences still may prove differently but we don't have a reason yet to believe it is really a path forward to promote."
 
#205
lapidus said:
I asked Bryan Pollard about the above quote from the article. This was his response:

" Thanks for reading this article and catching this detail. Yes – this is what the MEEI researchers think from their data. They cannot model a reason it would help.
Patient experiences still may prove differently but we don't have a reason yet to believe it is really a path forward to promote."
Click to expand...

Cannot model a reason it will help with what?

With ''hyperacusis''?

That thing some audiologist puts you in a booth and diagnoses you with ''if you have low LDLs''?

Which is frequency-based because ''hyperacusis is supposed to be frequency-based as it's the cochlea fibers that are ruined and this is about hearing loss which is hidden because I can't spot it''?

And if these LDLs are high you have misophonia? (when you could perfectly have myoclonus instead, but the audiologist is clueless so that's not on the table)

Well sure with that it wouldn't make sense.

But maybe if they stopped thinking the middle ear was the sahara desert... didn't they mention the oval window? the stapes bone mobility, and Silverstein's recent paper about mobility according to Ronna (someone needs to get Patel on the phone about this supposed paper)? Didn't they know about the middle ear muscles, I dunno phone Harold Kim see if he answers the phone to other practitioners, because I think anxiousjon's statements are extremely important... everyone's just sitting in front of their research papers?

Even in an interview the dehiscence expert at John Hopkins, Dr Carey (somewhere in Karen Henry's facebook dehiscence page, search keywords Carey or John Hopkins one of those), was saying the same exact reasons for why it wouldn't work for dehiscence, that it wouldn't block a third window, but he was saying something along the lines ''but maybe the oval window and the stapes is beind addressed with grafts'' iirc.
 
#206
But don't the patients that got this surgery see a hearing loss of 20 dB above 4K ? That's maybe why they have less discomfort as it mainly comes from the high frequencies it's like an earplug
 
#207
japongus said:
Cannot model a reason it will help with what?

With ''hyperacusis''?

That thing some audiologist puts you in a booth and diagnoses you with ''if you have low LDLs''?

Which is frequency-based because ''hyperacusis is supposed to be frequency-based as it's the cochlea fibers that are ruined and this is about hearing loss which is hidden because I can't spot it''?

And if these LDLs are high you have misophonia? (when you could perfectly have myoclonus instead, but the audiologist is clueless so that's not on the table)

Well sure with that it wouldn't make sense.

But maybe if they stopped thinking the middle ear was the sahara desert... didn't they mention the oval window? the stapes bone mobility, and Silverstein's recent paper about mobility according to Ronna (someone needs to get Patel on the phone about this supposed paper)? Didn't they know about the middle ear muscles, I dunno phone Harold Kim see if he answers the phone to other practitioners, because I think anxiousjon's statements are extremely important... everyone's just sitting in front of their research papers?

Even in an interview the dehiscence expert at John Hopkins, Dr Carey (somewhere in Karen Henry's facebook dehiscence page, search keywords Carey or John Hopkins one of those), was saying the same exact reasons for why it wouldn't work for dehiscence, that it wouldn't block a third window, but he was saying something along the lines ''but maybe the oval window and the stapes is beind addressed with grafts'' iirc.
Click to expand...

Yes, hyperacusis. I asked him the same thing I asked here in the post I made yesterday about the article. Neither the article or Bryan's answer to me mentioned reinforcement of the oval window though, and Silverstein reinforces both the round and the oval, right? Who is Patel?
 
#210
VRZ78 said:
But don't the patients that got this surgery see a hearing loss of 20 dB above 4K ? That's maybe why they have less discomfort as it mainly comes from the high frequencies it's like an earplug
Click to expand...
From the study:
"postoperatively, the patients reported no change in hearing and improved quality of life after the procedure."
 

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