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Wellness1_manifested

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Reply with quote  #51 
Ensure that the stapes is also packed with tissue..I'm Patient #27 to be operated on by Dr. Silverstein. I am niw free from hyperacusis after being diagnosed with Severe Hyperacusis in both ears. Wellness2 Manifested! Wellness to you and all the best. Sandy
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Johan_l

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Reply with quote  #52 
Quote:
Originally Posted by Wellness1_manifested
Ensure that the stapes is also packed with tissue..I'm Patient #27 to be operated on by Dr. Silverstein. I am niw free from hyperacusis after being diagnosed with Severe Hyperacusis in both ears. Wellness2 Manifested! Wellness to you and all the best. Sandy


Sounds amazing having your life back. I live in Sweden and am considering proposing this my ENT. (My H will not allow me to travel to the US)

Some questions:
Was your H noise induced?
I read a post where you mentioned a CT scan. Do you know that the Doctor was looking at and what conclusions he drew?
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Wellness1_manifested

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Reply with quote  #53 
Thanks. I do not know where my hyperacusis came from. I can now pinpoint it starting in 2014, although I was unaware of it and the progression through the years. I am not sure why Dr. Silverstein required the CT disks. All the best and wellness prayers to you.
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cozo

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Reply with quote  #54 
Hi there there is an option of driving to the uk for the operation
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dean cosnett
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syguy

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Reply with quote  #55 
What is the name of the clinic in the UK where this procedure is done?
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cozo

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Reply with quote  #56 
https://neconnected.co.uk/uk-first-procedure-for-debilitating-hearing-condition-carried-out-in-teesside/
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DanMalcore

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Dan
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Reply with quote  #57 
Dr. Silverstein's procedure is a band aid and, in my view, does not put the patient on the proper path to improving their decreased tolerance to sound.  I want to be clear on this - I understand that reinforcement of the round and oval window with temporalis fascia or tragal perichondrium may offer some benefit for individuals with severe hyperacusis however these are, for the most part I believe, are individuals who have never been to a qualified clinician and completed TRT.  

In 1991 I came down with severe hyperacusis.  The mere sound of my ears running across my pillow at night were too loud.  My LDL's were at minus decibel levels.  I could not tolerate my own voice.  For those who have not heard my story it can be seen at this link:

http://www.hyperacusis.net/what-to-do/success-stories/

I understand that everyone wants a quick fix, but Dr. Silverstein's approach, in my view is not the way to begin.  And contrary to what some would have you believe, it can have a negative impact on tinnitus.  Furthermore, as one ages and hearing loss sets in the opposite problem surfaces - how do I undo this so I can hear better.  The non-invasive path to improving decreased sound tolerance (DST) is sound therapy.  YOU CAN DO THIS ON YOUR OWN through the proper diagnosis, treatment and directive counseling of a qualified clinician.  Yes it takes time but rehab always takes time as it taps into your bodies own ability to recover.  In a survey this network took years ago by those who completed TRT 91% saw significant improvement in their DST.

As the founder and administrator of this network from the very beginning it troubles me to see the advocates of the Silverstein patch take over this network message board lately.  I question whether some of these individuals are receiving any compensation or are employed by the Silverstein team when in fact they appear in his promotional videos.  The constant soliciting of this approach will be monitored from this point on.  This message board will not continue to promote his practice because it violates the rules of this forum.  In closing I want to make it clear that I am not suggesting that the doctor is unprofessional or unethical in any way.  To his credit he has developed a quick fix with a very invasive surgical procedure that does dampen sound somewhat because of what is done to the inner ear.  I quite frankly would not want anyone tampering with my inner ear when I know I can improve my sound tolerances with sound therapy.  The first step should be sound therapy not the scalpel.

I will not do a back and forth with people who want to argue with me on my position on this.

Dan

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Steve2017

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Reply with quote  #58 

Whats your opinion on Silverstein's issues cozo you've had a lot to say about it in the past some nice and some abrupt posts?? If you don't mind me saying and if you're not going to tell me off for asking that is...

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s simpson
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Aplomado

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Reply with quote  #59 

Some people appear to have no positive effect from sound therapy.  For these surgery might be worth looking into.  Sound therapy sort of works for me that is why I am not interested in doing the surgery.  I do not think it would benefit me.  Unfortunately, there are a minority that appear to get no or little benefit from it (anecdotally, hyperacusis produced by lyme seems to be one of those).  

Cutting off discussion of the surgery seems unwise, since it seems to be beneficial for some.

For example, one or two people on this board have reported that removing their wisdom teeth cured hyperacusis.  Should we ban discussion of dental surgery for hyperacusis treatment?  TRT is the major treatment for this disorder, but it is not necessarily the only one that can possibly help 100% of patients.

The surgery may increase tinnitus... or it may not.  It may increase hearing loss, or it may not.  Let's let the patients who had the surgery discuss their results, so we can actually learn about the drawbacks.

Given that we have had patients from several countries discuss their results with the surgery, it is highly unlikely that they are all paid shills of Silverstein.  This thread was started by someone in the UK, after all.

There is a wide variety of causes and symptoms of hyperacusis.  It only makes sense that multiple treatments may work at different effectiveness for different patients.


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Aplomado

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Reply with quote  #60 
Quote:
Originally Posted by DanMalcore
I quite frankly would not want anyone tampering with my inner ear when I know I can improve my sound tolerances with sound therapy.  The first step should be sound therapy not the scalpel.

Dan


You are right about these statements.  The first step should be sound therapy.  However, some people get no positive results after trying sound therapy.  The stat you quoted said 91% get improvement with sound therapy (I am one).  What about the other 9% who don't?  
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DanMalcore

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Dan
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Reply with quote  #61 
Time after time I have seen that those who say sound therapy did not work for them either:

a) did not work through a qualified clinician

b) have worked through a qualified clinician but did not follow their directives

c) aborted sound therapy

I have communicated with thousands of individuals who have or claim they have hyperacusis.  If you could only see what I have seen and how terribly awful some peoples sound tolerances have collapsed.  Isolated in their bedrooms or basements and yes, even those people have gotten their lives back through sound therapy with the work of a knowledgeable clinician.  Rehab takes time and some do not have the self motivation to stick with the program or spend the money to travel to a qualified clinician.  We live in a world who demands a quick fix.  This is part of the appeal that draws people to Silverstein.

Dan

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Aplomado

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Reply with quote  #62 
You certainly may be right about many people Dan.  We have seen examples of folks who quit TRT early on this board.

Maybe not everyone though.  My audiologist said TRT hasn't be as effective with her patients with lyme.  Would the surgery help them?  I would like to know.  It is certainly worth investigating.
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Steve2017

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Reply with quote  #63 
You have obviously given this a lot of thought and consideration Dan - and researched it all very carefully before posting this. Stand firm with your beliefs with it if you believe it all to be correct, we mostly here stand behind you with support - you do this because you care... 
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s simpson
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cozo

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Reply with quote  #64 
No telling off today Steve 2017 😎 . The way I look at it is if you can get any sort of surgery what means you're life is made better , we'll go a head and do it!! Before I had my opp on one ear I felt like killing my self many times I didn't go out, I stopped listing to my music which is a very very big part of my life ( and the cause of my hyperacuss) I split with my girlfriend of 9 years who I loved and still do because she just didn't understand what I was going through , when we split I lived back at my mothers house locked away in my bedroom away from the loud planet out side the door . I tried trt and pink noise generators for nearly a year and yes I did have a small inprovement but as soon as I went out BANG the horrible condition was back so after read on the Internet for a year solid all about hyperacuss and watching all the videos on you tube I heard dr Silverstein mention a dr in the uk who does a similar operation for a different ear problem so I thought may be he could help . So booked up with him drove for 4 hours told him my symptoms and he said he could do the same opp as Silverstein .So I got a loan from the bank and had it done I'm now 50% better as I've still got it in my left ear . So I'm saving up all my over time wages and having the other one done . Ps I'm not suicidal any more SO THE OPP SAVED MY LIFE .
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dean cosnett
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Steve2017

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Reply with quote  #65 
Well this is turning out a good debate from both sides, anyone else got anything to say...
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s simpson
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Aplomado

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Reply with quote  #66 
Thank you for telling us about your experiences cozo.
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dave2

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Reply with quote  #67 
Aplomado said:

Quote:
You certainly may be right about many people Dan.  We have seen examples of folks who quit TRT early on this board.

Maybe not everyone though.  My audiologist said TRT hasn't be as effective with her patients with lyme.  Would the surgery help them?  I would like to know.  It is certainly worth investigating.


I can only speak to my own case, but I am in the group where TRT did not help. In fact by the end of my TRT treatment my LDLs dropped precipitously, from the mid-80s to the mid-60s. In 20/20 hindsight, Monday morning quarterbacking, I deeply regret trying it. My TRT was under the care of one of the clinicians on the TRTA network, one with a tremendous amount of experience treating hyperacusis patients with TRT.

Lyme disease is one of the many things I have been tested for, and I have been tested a few different times for it, but has always come up negative. So Lyme does not seem to be my issue.

Anyway, as someone with debilitating hyperacusis who has not improved with TRT, and in fact went the other direction, I am extremely grateful to any and all research to find additional new avenues of treatment for H.
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rodmccain

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Reply with quote  #68 
Hi Dan,

I have contacted quite a few people that tell me TRT did not work for their H.  I myself, who am classified a category 4 per Jasteboff, can not tolerate the generators.  I had pain in the beginning, but most of that has subsided.   My issues are debilitating AMPLIFIED hearing perception with all environmental noise and chronic multiple T signals. 

My question is this:  What are the primary symptoms of Hyperacusis??   The definition seems to be getting confusing and ambiguous.  It has been my understanding for 6 1/2 yrs since I developed this disabling condition, that LOUDNESS was the primary symptom. You may have pain too, but not necessarily.  I thought loudness was the primary reason people turned to Dr S originally as well.   Now we have people that have pain only, that have been cured/helped.  We have people with pain only, that have not been helped.  There are people who have had the procedure, for LOUDNESS  only,  that have seen significant results, some nothing. 

In order to find relief/cure, or significant improvement, I believe it would be extremely helpful to everyone, to have a clear definition of symptoms.  It may be possible they have been misdiagnosed, and if so are they getting the right therapy?? 

I am asking because I am very confused as well.  I need clarification. 

Lastly...I want to be clear, that I am in no way making light of anyone else, that has different symptoms than
myself.  

Hi dave2   I am very sorry to hear that your condition has worsened.  Any type of symptom that keeps you from living life to the fullest is extremely difficult.  We must find long term relief/cure.

Regards
Kathy McCain
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cozo

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Reply with quote  #69 
Sounds that hurt my ears are.

Plastic water bottles
Water hitting the shower tray
Dogs barking
People whistling
People clapping
Being in a room with lots of people talking
Cutlery on plates
Loading the dish washer

If anyone suffers the same Above then there's a good chance the surgery will help

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dean cosnett
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janeygirl

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Reply with quote  #70 
Can you tell me about this operation, I've not heard of it and thanks for sharing.


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Jane Parks-McKay
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dave2

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Reply with quote  #71 
janeygirl said:

Quote:
Can you tell me about this operation, I've not heard of it and thanks for sharing.


This link contains a great deal of information about the H surgery. There are also other threads here on Chat H with discussion and the Facebook groups have discussion too.

https://www.earsinus.com/inventions-procedures
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cozo

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Reply with quote  #72 
Quote:
Originally Posted by janeygirl
Can you tell me about this operation, I've not heard of it and thanks for sharing.


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dean cosnett
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cozo

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Reply with quote  #73 
https://neconnected.co.uk/uk-first-procedure-for-debilitating-hearing-condition-carried-out-in-teesside/
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dean cosnett
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Aplomado

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Reply with quote  #74 
Quote:
Originally Posted by rodmccain
Hi Dan,

In order to find relief/cure, or significant improvement, I believe it would be extremely helpful to everyone, to have a clear definition of symptoms.  It may be possible they have been misdiagnosed, and if so are they getting the right therapy?? 

I am asking because I am very confused as well.  I need clarification. 



Hyperacusis is when your "sound tolerances have collapsed."  That is a good simple definition.  It is caused by different things, and has varying symptoms.
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DanMalcore

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Reply with quote  #75 
Quote:
In order to find relief/cure, or significant improvement, I believe it would be extremely helpful to everyone, to have a clear definition of symptoms.  It may be possible they have been misdiagnosed, and if so are they getting the right therapy?? 

I am asking because I am very confused as well.  I need clarification. 



I am going to quote a section from the book "Living with Tinnitus and Hyperacusis" by Dr. Laurence McKenna, Dr. David Baguley and Dr. Ron McFerran.  I hope this helps you...

"Defining problems associated with sound sensitivity is difficult.  We all have a limit to the loudness of sound that we can comfortably tolerate.  This limit is not fixed, but varies according to the context of the sound and your mood.  Thus, a sound that you can usually tolerate with ease can seem unbearably loud when you are tired, stressed or ill.  Similarly, most of us have particular sounds that we dislike, such as chalk screeching down a blackboard or the squeal of a London taxi's brakes.  So, when does a normal reaction to sound change and become hyperacusis?  The answer is, when it causes significant distress or even pain to the person who is experiencing it."

In another book "Hyperacusis" by David Baguley and Gerhard Andersson they state, "We use hyperacusis to describe the experience of inordinate loudness of sound that most people tolerate weel, associated with a component of distress.  In our opinion this experience has a physiologic basis, which may be associated with otologic pathology, but is also has a psychological component."

In the book "Tinnitus Retraining Therapy" Pawel Jastreboff and Jonathan Hazell have more of a clinical definition of hyperacusis:

Hyperacusis is an "Abnormally strong reaction to sound occurring within the auditory pathways.  At the behavioral level, is is manifested by a patient experiencing physical discomfort as a result of exposure to sound (quiet, medium or loud).  The same sound would not evoke a similar reaction in an average listener.  The strength of the reaction is controlled by the physical characteristics of the sound (e.g., its spectrum and intensity).  It can result from both peripheral and central auditory dysfunction."

Jack Vernon, a pioneer in the diagnosis and treatment of hyperacusis would often define it as a "collapsed tolerance to normal environmental sound."

More recently Decreased Sound Tolerance or DST is used to describe sound sensitivity.  Decreased sound tolerance however can result from hyperacusis, misophonia, phonophobia, recruitment or any combination of these phenomena.

The bottom line is this, if normal everyday sounds are preventing you from leading a happy productive life you need help.

Dan


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Johan_l

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Reply with quote  #76 
Quote:
Originally Posted by EDogg
Hi TallDude,

I hope we can both get back into our hobbies. To answer your question, no I have never had my tensor tympani visualized, though I can’t imagine what else would be causing the fluttering in my ears with sound. It’s one of those tiny muscles over reacting. I hope your appointment with Dr. Boedts is helpful. I recall from Dr. Norena’s paper the mention of a case report (in process) by Dr. Myriam Wescott, who apparently successfully treated TTM myoclonus with a stellate ganglion nerve block. That might be worth further investigation or discussion with the ENT. It would be a rather minimally invasive injection into the anterior neck soft tissue. Likely very tolerable with local anesthesia. Something to think about.

Best,
EDogg


I think the last part gives details on the Nerve Block case
https://www.themonthly.com.au/issue/2018/may/1525096800/kate-cole-adams/when-sound-becomes-pain
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trying

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Reply with quote  #77 
Quote:
Originally Posted by DanMalcore



I am going to quote a section from the book "Living with Tinnitus and Hyperacusis" by Dr. Laurence McKenna, Dr. David Baguley and Dr. Ron McFerran.  I hope this helps you...

"Defining problems associated with sound sensitivity is difficult.  We all have a limit to the loudness of sound that we can comfortably tolerate.  This limit is not fixed, but varies according to the context of the sound and your mood.  Thus, a sound that you can usually tolerate with ease can seem unbearably loud when you are tired, stressed or ill.  Similarly, most of us have particular sounds that we dislike, such as chalk screeching down a blackboard or the squeal of a London taxi's brakes.  So, when does a normal reaction to sound change and become hyperacusis?  The answer is, when it causes significant distress or even pain to the person who is experiencing it."

In another book "Hyperacusis" by David Baguley and Gerhard Andersson they state, "We use hyperacusis to describe the experience of inordinate loudness of sound that most people tolerate weel, associated with a component of distress.  In our opinion this experience has a physiologic basis, which may be associated with otologic pathology, but is also has a psychological component."

In the book "Tinnitus Retraining Therapy" Pawel Jastreboff and Jonathan Hazell have more of a clinical definition of hyperacusis:

Hyperacusis is an "Abnormally strong reaction to sound occurring within the auditory pathways.  At the behavioral level, is is manifested by a patient experiencing physical discomfort as a result of exposure to sound (quiet, medium or loud).  The same sound would not evoke a similar reaction in an average listener.  The strength of the reaction is controlled by the physical characteristics of the sound (e.g., its spectrum and intensity).  It can result from both peripheral and central auditory dysfunction."

Jack Vernon, a pioneer in the diagnosis and treatment of hyperacusis would often define it as a "collapsed tolerance to normal environmental sound."

More recently Decreased Sound Tolerance or DST is used to describe sound sensitivity.  Decreased sound tolerance however can result from hyperacusis, misophonia, phonophobia, recruitment or any combination of these phenomena.

The bottom line is this, if normal everyday sounds are preventing you from leading a happy productive life you need help.

Dan


Very helpful definition of hyperacusis and even though my came after a relapse of CFS/ME definitions are still relevant to me.
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ram1205

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Reply with quote  #78 
Quote:
Originally Posted by Ghirin11
Hello,
I have had H for the past 2+ years.  I do not have T.  The symptoms that bother me most are the autophony and sound sensitivity.  I have seen countless doctors with no success in getting help.   I tried sound therapy for almost a year.  I didn't have any improvement so stopped using the sound generator.   I am getting desperate and would try anything at this point.  I go see my doctor this Monday at MEEI.  I have only seen him one other time.   I mentioned the Silverstein surgery to him and he said that they perform that surgery at MEEI.  I am so tired of all the waiting and Zero improvement in symptoms.  My last visit at MEEI entailed removing the tubes from my ears, then a four month wait for them to heal.  That's the waiting I am talking about!!  I am at the end of my rope as everyone is in this forum.   

Mona      


Hello Mona
Two question what is MEEi and where it is ?
And what tubes are they going to remove

Thanks
Ram

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Ram
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rodmccain

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Reply with quote  #79 
Hi Ram

When you say H do you mean sound induced pain, or is your hearing abnormal,  as in all environmental sound too loud or amplified?

Thanks, and hope if you choose the procedure you see results.

Kathy McCain
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rodmccain

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Reply with quote  #80 
Hi Dan,

I appreciate your support group and all you do very much so, but my H is loudness.  I hear all environment sound AMPLIFIED and too loud.  My mood does not change this at all.  I also have chronic multiple T signals, which can get louder at times when I am upset.  It also can spike for no reason. 

I guess what I am saying, (respectfully) that my mood really has nothing to do with these conditions, and it definitely has nothing to do with my hearing issue.  I was tested and have NO hearing loss.  Too bad they don't have a reverse hearing aid.

Both conditions are severe, but I do believe it is the horrible amplified hearing which increases the T that keeps me house bound.  I was a very active person before this happened.

Good to see you posting again Dan.

Sincerely,
Kathy McCain
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ram1205

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Reply with quote  #81 
Quote:
Originally Posted by rodmccain
Hi Ghirin11

When you say H do you mean sound induced pain, or is your hearing abnormal,  as in all environmental sound too loud or amplified?

Thanks, and hope if you choose the procedure you see results.

Kathy McCain


Hello Kathy
I think my H means I am sensitive to high pitch and high frequency sound very much , they are so amplified that my head hurts , the sound of running water , motorcycle, lawn mover, clanging dishes , rattle of spoon , any metal or screeching noise, but I am ok with human voice and dull noise , I don’t know if my T is due to H, but whenever I had a audio gram done or put a hearing aid in my ears than my amplification to sound increase for a week or more, I have been very depressed and at one time even thought of suicide as this is unbearable and I can’t sleep at night , have to take Ativan .5 mg every night to sleep, can not go to restaurant or movie theater or can’t even fly , wanted to go to India to see me sick mothers but i don’t think I can sit in a flight, sorry to bother you all with my problem.
If any one can provide any helpful hints I will really appreciate it

Ram

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Ram
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rodmccain

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Reply with quote  #82 
Hi Ram,

Sorry to hear of your issues.  I can relate. Most people's voices still sound too loud to me still as well !  If I listen too much or have a conversation, T spikes.  Just about everything is too loud.  I occasionally get pain or soreness, but Loudness and T are the main issues. 

I do know how limiting your life becomes.  I have never posted this on any support group, but I have thought of suicide myself.  I absolutely can never do air travel ! Even travel by car is limited, and no I can not go to restaurants or any public place. 

I wish I had the answers for you, but I don't have them for myself !  Just keep trying different approaches. I have been to several doctors and audiologists.  To be honest they don't have any answers either and tell me so !  The lack of medical support. and the isolation are real killers. 

Oh...I have autophony ( my voice sounds too loud) as well, which I somehow always forget to include to my list of multiple issues.  

Do you know how this happened?

Kathy Mc
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ram1205

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Reply with quote  #83 
Hi Ram,

Sorry to hear of your issues.  I can relate. Most people's voices still sound too loud to me still as well !  If I listen too much or have a conversation, T spikes.  Just about everything is too loud.  I occasionally get pain or soreness, but Loudness and T are the main issues. 

I do know how limiting your life becomes.  I have never posted this on any support group, but I have thought of suicide myself.  I absolutely can never do air travel ! Even travel by car is limited, and no I can not go to restaurants or any public place. 

I wish I had the answers for you, but I don't have them for myself !  Just keep trying different approaches. I have been to several doctors and audiologists.  To be honest they don't have any answers either and tell me so !  The lack of medical support. and the isolation are real killers. 

Oh...I have autophony ( my voice sounds too loud) as well, which I somehow always forget to include to my list of multiple issues.  

Do you know how this happened?

Kathy Mc[/QUOT

Hello Kathy
Two months ago I had gone to a dentist and than next day I went to a chiropractor for my upper back treatment which I was going for two months and he uses to massage the back neck and sometimes got to head with a genie Rub which is a strong massager and next day I had a severe explosion is my ear and T started , did not know about. H for few days when I could not brush my teeth or shave with running water in sink , still I have to use ear plugs to brush shave and take a shower. T goes down to minimal after one hour after I take Ativan .5 mg at night to sleep till morning , when I get up it is low then after shower it increases and in the evening it is very loud almost unbearable, it is also based on mood , depression, anxiety , sodium intake , even some medications, Higher BP , and wzpaure to outside loud noise, have looked for so many different options of surgery , and one ENT surgeon advised to remove Stepes bone in one ear which was implanted 10 years ago. Still thinking On that route . Even explored stem cell therapy and they said it will bring T down from 10 to 3 but won’t eliminate completely, I may explore with dr In sarosota fl as mentioned in this thread, but life has become miserable and I am trying to hang in there , sharing and learning from this group helps a lot , o want to thank everyone for their input and kind words of encouragement

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Ram
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Kellyboo80

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Reply with quote  #84 
I just filled out the forms that Dr. Silverstein emailed me about the surgery. How much did it cost? Knowing he does surgery has given me a glimmer of hope but still waiting on a reply back from him. I was really curious of the cost though so I can prepare myself. Thanks a lot
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Kellyboo80

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Reply with quote  #85 
Quote:
Originally Posted by Wellness1_manifested
Not/not a mechanical fix. Dr. Silverstein saved my life when I was at my lowest with Severe Hyperacusis bilaterally. This surgery works. I am living proof. Check out Hyperacusis Hope in facebook. Sandy McDonald
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dave2

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Reply with quote  #86 
Kellyboo80 said:

I was really curious of the cost though so I can prepare myself.

——-

In the United States the hyperacusis surgery is covered by both private insurance and Medicare. So the cost depends on the insurance policy - co-pays, deductibles, etc. For someone with really good medical insurance the cost could be zero or very low.
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TallDude

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Reply with quote  #87 
"Originally Posted by Wellness1_manifested
Not/not a mechanical fix. Dr. Silverstein saved my life when I was at my lowest with Severe Hyperacusis bilaterally. This surgery works. I am living proof. Check out Hyperacusis Hope in facebook. Sandy McDonald
"

Placing tissue on the stapes to reduce movement is not a mechanical fix, please explain.
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cozo

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Reply with quote  #88 
Hi everyone I’ve set up a page on Facebook called Hypercussis surgery success talk. Please join .friend request me at Coz couriers and I will add you to the group . Thanks
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