Round and Oval Window Reinforcement for the Treatment of Hyperacusis

Yeah I know but that's what the patient reported. I thought they made audiograms that showed hearing loss. Anyway my bad

 

There was talk before he made the study about high frequency hearing loss. But I guess it's considered a risk more than an absolute outcome.

 

hpatel@earsinus.com is the one answering queries to Silverstein it seems.

The problem with ''hyperacusis'' is it's defined by ''discomfort'' on an LDL test. Nothing more. And if you score high on the test you're accused of being phonophobic or misophonic. It's an embarrassingly poorly researched either/or option that doesn't explore any possibilities or hypotheses about the different injuries to the ear could cause different types of discomfort.

''Discomfort'' can mean anything, and the LDL tests are carried out by the audiologist industry, which is heavily influenced by Jastreboff. Judging from my interactions with sound therapists or the admin of chat-h Rob, ''discomfort'' and ''lack of discomfort but still certain sounds cause trouble'' can mean a range of perceptions that aren't specified or researched because they're regarded as irrelevant by Jastrebluff.

 

"I may be able to do a few things again other than just read books."

The read a book comment made me smile

That's all I can do also for now...(8 weeks in t and fresh h...) But it could be worse?

Think about the great thinkers? Shakespeare, Moliere, Socrates... Etc...only reading also!

Not a big deal really, could be worse, say that on a blind forum...they would want to choke you!

 

WTF? Not pain, not discomfort...trouble?

 

It's total dishonesty. I grilled Rob over and over about it and he was a total coward about it, he just kept repeating my discomfort wasn't discomfort. He resorted to ad hominem once he knew he didn't have a case to stand on, and got me banned at chat-h, and a thread deleted at tsmb.

Here specifically, lack of discomfort on the LDL means it's misophonia/phonophobia according to Jastrebluff's disgraceful writings.

It was comic seeing Rob try to shift the blame on me by saying sometimes I would choose to score low on the LDL test. The truth is LDL tests are stupid and so are the audiologists that carry them out, so sometimes I'd get across to them that constant sound was more tolerable than a short beep, sometimes I wouldn't. Both Rob and audiologists aggressively show extreme illiteracy when it comes to this.

 

@japongus

audiologists keep in their rates only people who had "success", when you stopped because of ear pain or discomfort they don't include you in their figures

 

Who is Damien Ponsot? Is that the french doctor who performed the surgery on you?

 

Damien Ponsot wrote what is arguably the most comprehensive article on Hyperacusis.

https://hal.archives-ouvertes.fr/hal-01202136v2/document

 

Ah, yes. Mithrandir has posted this one before. Thanks!

 

Nope Ponsot is a french researcher, he's closer to the truth than other for a good reason. He began to make a very exhaustive review and now he works only on the most logical way for H noise induced with pain, it means TTTS.

I discovered Damien Ponsot thanks to Lymebite, the american guy

 

The results suggest that reinforcement of the round and oval window with temporalis fascia or tragal perichondrium may offer significant benefit for individuals with severe hyperacusis that has not responded to traditional therapy. ULL scores and self-report measures postoperatively demonstrate improved noise tolerance, high patient satisfaction, and enhanced quality of life.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5100801/

 

Upcoming seminar on the hyperacusis surgery.

https://www.eventbrite.com/e/hyperacusis-seminar-tickets-30935599210

 

Only 1 hour? Will there be a q and a session?

 

I'm thinking maybe I should make the transatlantic trip, if I can get that many successful H patients in the same room to see if they also mean TTTS. Or did he mention elsewhere that they don't address things like tympanic flutter? Because the institute ignored me on the emails.

On the negative side Sarasota is reportedly a scientology shithole.

 

Yet another hyperacusis seminar - March 29, 2017.

https://www.eventbrite.com/e/hyperacusis-seminar-tickets-32467915409

 

Sarasota is a very beautiful (mostly retirement) community on the Gulf of Mexico in Florida. My parents live there and I've been going there for years. I never saw any scientology buildings or activity... ANYWHERE there! You might be thinking of Clearwater.

 

Right that's the one, Clearwater, that was the place I read being full of them. I'm sorry, I'm sure Sarasota is a nice place apart from the probable fact that you get alligators rammed up your bum every two seconds.

 

Been a while since we heard something about this. Will there be anymore studies? @japongus you wouldn't happen to know what Silverstein is up to these days?

 

Only if you camp out by a canal Though honestly I haven't heard much about alligators there.

 

Nah, the doctors from his team ignored my numerous requests for more detailed descriptions of the hyperacusis via email. I also tried to extract more detailed reports from someone on fb, an attender to Silverstein conferences who hadn't got much of a positive results from the op, but she also mostly ignored me. The doctors don't seem to care and the whole thing might die out when Silverstein retires, and they'll all probably return to their daily hustle of easy moneys from stapedotomies for 'real otology' and neuromonics for jastreboff's alice in wonderland otology. I also didn't fly over the atlantic to the conference to extract the info from the attenders because of the price of travel and the probabilities of making it there sufficiently exhausted and sleep-deprived to not concentrate enough in the 15 seconds I'd probably be given to extract said info.

Since then it's been revealed it may be helping with the pain but not the LDLs. Which is a nail in the coffin of the jastreboffists at chat-h that were desperately scrambling when the news of the paper came out, saying it was like an ear plug.

 

A New Treatment For Hyperacusis 2016 2nd...

 

Jastreboofheads?

 

Sorry, this shouldn't even be considered serious. When it comes to health, and especially anything as fragile as hearing, there really needs to be a MUCH larger sample size than two patients. I want to know about the failures as well. How many patients have permanent hearing loss afterwards? Where is the peer review?

Be very careful of charlatans and quacks. Especially those that say they have the answer for what ails you.

 

Peer review is usually rubbish anyways. Silverstein hosted 4 seminars in the last 2 years chock full of patients speaking about their experience and people living in the east coast should have gone and nitpicked what exactly had improved for them and where the failures were at.

 

New video from the Silverstein Institute published 14 September 2017 on the hyperacusis surgery.

http://blog.earsinus.com/what-is-hyperacusis-video

 

A new Silverstein Institute video on the hyperacusis surgery with patients who have undergone the procedure.

The seminar was held on 7 December 2017 and includes some patients who have appeared in previous videos and also some new patients who have not appeared before.

Round and Oval Window Reinforcement for...

 

Reinforcing the stapes is what @japongus talked about earlier in this thread, right? When he shows the video clips of before and after he says "This was one of our first patients", does he mean the first patient who had this exact procedure or does he imply that everyone who's done the reinforcement of the round and oval windows also had their stapes reinforced? I'm guessing the former since this seems to be a new thing entirely.

Edit: scratch that. I see now he's talking about 7 patients having reinforced stapes.

 

I came across this video:

A New Treatment For Hyperacusis 2016 2nd...

Here is the research paper from 2016:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5100801/pdf/mao-37-1482.pdf

Not sure if this a duplicate on the website.

 

The latest Silverstein lecture was very interesting. I emailed the organizer before the conference to try to get him to figure out if the patients had been complaining of sudden sounds. I watched the video a month ago or so and seem to recall that they kept mentioning sudden sounds, so maybe there's a small chance he asked them specifically about it. Maybe my memory's just fantasizing and doing a sort of confirmation bias though. However I also remember that they didn't specify whether they were actual vibrations inside the ear, like in my case, and in fact 1 or 2 patients even went on to say that their issues were sudden sound weren't inside the ear and in the form of a vibration at all. Anyway, I'll watch the video sometime again in the future.