The Hyperacusis Network Message Board
Sign up Latest Topics
 
 
 


Reply
  Author   Comment  
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #1 
I can appreciate someone's opinion. BRAVO!!!     But I believe that each case is unique, and if some people are having remarkable success, then Great!

If it's a band aid that lasts a year, then that's one year that is free from those symptoms. It doesn't mean they are being paid to say it.

I really don't care who you are!

)-8

This posting was edited because it violates Mandatory Board Etiquette.  
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #2 
Quote:
Originally Posted by Ready_Ornot
I can appreciate someone's opinion. BRAVO!!!     But I believe that each case is unique, and if some people are having remarkable success, then Great!

If it's a band aid that lasts a year, then that's one year that is free from those symptoms. It doesn't mean they are being paid to say it.

I really don't care who you are!

)-8

This posting was edited because it violates Mandatory Board Etiquette.  





Of course it was edited, because it doesn't agree.
Our entries here can really only speak to our own personal experience and how that information might help someone else. People are different, so effective treatments are different.
0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,399
Reply with quote  #3 
Have you done TRT through a trained clinician?

Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #4 
No, I admit I haven't.
Have you had Dr Silverstein perform his Hyperacusis surgery on you?
0
Steve2017

Registered:
Posts: 126
Reply with quote  #5 
I'm interested 'Ready' - have you knowledge of this?
__________________
s simpson
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #6 
Working with Insurance on it this morning.
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #7 
Working with Insurance on it this morning.
0
Steve2017

Registered:
Posts: 126
Reply with quote  #8 
I'm surprised, the amount of people on this forum, that nobody has replied with direct knowledge of what goes on with success ratios at Silverstein Ins - someone who has actually had procedures completed there, or have I missed this information somewhere... 
__________________
s simpson
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #9 
I know firsthand that a friend in Canada had it done in both ears.. she's living an entirely new existence. She expressed it here and was accused of being paid to say so. She wont be back
0
Steve2017

Registered:
Posts: 126
Reply with quote  #10 
Anyone else on this forum had it done, anyone else got anything to say?
__________________
s simpson
0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,399
Reply with quote  #11 
Just my view, which you are welcome to disagree with, but I think having a surgically invasive procedure done to alter my ears in any way is unwise especially when sound therapy is so effective when done under the guidance of a trained clinician.  

And, by the way I am one who does care.  I have been running this network since 1991 out of my home so people like you can post messages free and obtain support from individuals throughout the world with varying view points.

Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #12 
Well stated! And I do appreciate this network. I seriously tip my hat to you!
There is not another H or T support site quite like it for accessibility and ease.
As I have been told by doctors including an Otolaryngologist, Otologist, Neurotologist, neurosurgeon, Vestibular Physical Therapist and at least 3 Audiologists;
No two cases are identical. Which means that one single therapy or procedure cannot restore everyone.
Agreed?
0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,399
Reply with quote  #13 
Part of the beauty of this board is that everyone should feel free to discuss their experience with sound sensitivity.  We don't even know what we don't even know.  I do agree that one approach might not be as effective as another approach because we are all different.  My concern here is that we live in a society that is so impatient and wants everything right now.  In this case, rather than do sound therapy which takes months and has a high success rate in improving sound tolerance, some will alter their ear permanently and seek out Silverstein.  Again, this is just my view.  Welcome to this message board and your participation.

Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #14 
Mr. Malcore,  So glad that we can agree on that.

I own a microwave and a car and I talk on the phone rather than go to the persons house, or just text.
I guess I am impatient.

Having to support my family is important, and I am not capable of continuing at my current occupation with this condition. I have already altered my schedule to night shift to avoid excessive noise and crowds, but physically, I am wearing thin from walking around tense and jumpy constantly. Sleeping little at a time. 

Yes, I am willing to try the quick fix. In my mind, it could not possibly be worse to have my middle and inner ear permanently altered, since I've even considered voluntary deafness in my bad ear as an option.

Since the right ear is better (45Db to 60 Db LDL depending on frequency), I plan on TRT there later.

But right now, I'm like a long tailed cat in room full of rocking chairs... 


BTW DAN: Thanks for your patience with me, I will be donating to keep your site up.
Plz shoot me and email to show me how.
Blessings to All,
Ready (meow)
0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,399
Reply with quote  #15 
Wishing the very best for you.

If you would like to donate to the network click on this link:

http://www.hyperacusis.net/contact/donate/

Thank you my friend,

Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #16 
Ok, I Kept my word and Donated to the Site.
Guess I'm staying for a while  [rolleyes]
0
Steve2017

Registered:
Posts: 126
Reply with quote  #17 

Ready.

Welcome - did your H start with a noise trauma or just come on gradually like mine, took years to get hold of me it did, I didn't even know it had a name I would just say to my kids who now have kids of their own I just have over sensitive hearing..



__________________
s simpson
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #18 
My H,T and vertigo started almost immediately after an errant ear irrigation. 450 days ago...Id gone in for some blockage and the doc used a handheld syringe of warm water. After the plugs came out he continued and BAM! instant noise, confusion, pressure, pain, and weirdness. In an instant, lifechanger!  I couldn't distinguish anything for quite a while. ER two days later and then the barrage of testing and specialists.   You'd think Id have a case, but 3 lawyers say no.    btw, im almost 60 yrs old
0
Steve2017

Registered:
Posts: 126
Reply with quote  #19 
I've heard of someone else on here that had ears syringed and major problems after, sorry to hear about that - maybe someone on here knows or is aware of some answers/solutions and will post some possible help/ideas to improve things as word gets around on this forum.  
__________________
s simpson
0
rodmccain

Registered:
Posts: 210
Reply with quote  #20 
Hi Everyone,

Since the diagnosis of H has become so ambiguous, as to it's symptoms, I believe it is important to state your SPECIFIC symptoms.

Thank you,
Kathy Mc
0
EDogg

Registered:
Posts: 158
Reply with quote  #21 
I completely agree Kathy. The term hyperacusis is used so loosely and can be quite nebulous. Thank goodness researchers are hard at work, right now, trying to find better ways to better define and classify disorders of decreased sound intolerance. If this surgery helps “hyperacusis”, which subtype (s) are we referring to? Have they looked into this? Those of us who have suffered from this for long enough know that no two cases are the same. Also, hyperacusis caused by acoustic shock is not the same as hyperacusis caused by chemical exposure or head trauma or migraines or Lyme disease. The symptoms may be similar, they may improve to some degree with sound therapy (or not), but the underlying pathologies are different.
0
Lapidus

Registered:
Posts: 11
Reply with quote  #22 
Quote:
Originally Posted by EDogg
I completely agree Kathy. The term hyperacusis is used so loosely and can be quite nebulous. Thank goodness researchers are hard at work, right now, trying to find better ways to better define and classify disorders of decreased sound intolerance. If this surgery helps “hyperacusis”, which subtype (s) are we referring to? Have they looked into this? Those of us who have suffered from this for long enough know that no two cases are the same. Also, hyperacusis caused by acoustic shock is not the same as hyperacusis caused by chemical exposure or head trauma or migraines or Lyme disease. The symptoms may be similar, they may improve to some degree with sound therapy (or not), but the underlying pathologies are different.


Yes, I agree. If the last 8 years of research has shown us anything, it is that "hyperacusis" is no longer a legit diagnosis but rather an umbrellla term for several types of DSTs. Researchers have since a couple of years back started to differentiate between loudness H and pain H (noxacusis). So that's a start I guess.

Regarding who the Silverstein procedure benefits there is no clear answer because there's not enough data yet but Silverstein published a paper where he propose a theory that one type of "hyperacusis" might be caused by hypermobile stapes and his second procedure (reinforcement of the stapes) could be one way to treat it. However, it is not known if hypermobile stapes are a cause or if it is a result of hyperacusis due to something else (damaged nerve fibers in the inner ear for example).

Personally I'm of the belief that some types of "hyperacusis" could very well be entirely middle ear related (hypermoile stapes, dysfunctional tensor tympani muscles etc). But no matter the pathology, everyone will get the diagnosis "hyperacusis" through an LDL-test. Until we know how to properly diagnose and differentiate between all these subtypes, we won't know who will benefit from what approach/treatment. 
0
gutsygirl

Registered:
Posts: 32
Reply with quote  #23 
Ready_Ornot - I just wanted to extend a hug or handshake or reaffirming nod...whatever resonates with you, to let you know that I feel for you. I know you're hurting and my heart hurts for your pain. I hope you can find some comfort from folks here. I pray that you will find relief, peace, and friendship. Bless you! Please keep writing. 

As for me, I have very many complex and debilitating diseases along with the H. So I'm not on this message board very often, but when I'm here, I'm always encouraged that I'm not alone even when I feel scared because of my H and how hard it is to comprehend the agitation and pain and fight-flight it causes me. 
0
rodmccain

Registered:
Posts: 210
Reply with quote  #24 
Thank you EDogg and Lapidus,

You have articulated my feelings much better than I have!

I am so confused to begin with and this adds to it.  I have not been able to find any treatment that really helps me either. 

Best regards,
Kathy McCain

I had a water irrigation many years ago with similar consequences.  It did go away with time. Since then, I have never let anyone but an ENT clean my ears....no water irrigation either!  My doctor used a suction, or manual.  Now that I have had this severe noise injury from MRI though, she is saying MANUAL only.  My dentist does manual only. I simply can not have any drill, or laser in  my mouth, without very serious consequences!   My sanity is more important to me than even my teeth.
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #25 
Gustygirl,
I want to thank you for your encouragement and well wishes. I do enjoy reading what is working for people and what isn't. And this forum is great for that.
I am always alarmed and have to speak up when someone trys to put a general term or a blanket cure-all on us, no matter the affliction. Thats why i started this thread. The censorship thing is a huge pet peave and given the extremely limited research by comparison that H is given, no one has license to think they know the cure. Im afraid "better" is the goal. At least it is for me with family responsibilities and all.
I am so sorry to hear that you have more things to deal with on top of H. I wish you faith,health and peace. Also, I send you a huge hug, handshake and nod sweet lady. Your hand of friendship is very welcoming. Much Blessing,
Ready
0
cozo

Registered:
Posts: 39
Reply with quote  #26 
Hi every one . I've got hyperacuss (of some sort) because of headphones abuse
__________________
dean cosnett
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #27 
Hi Cozo,
So sorry to hear that. What do you use now? Are you still able to listen to music?
Hope you find something to help cope.
regards,
Ready
0
cozo

Registered:
Posts: 39
Reply with quote  #28 
Hi there I've had the opp done on one ear just saving up now to have the other one done . I'm to scared to even try headphones but I love my music so just listen to it very low volume with a good quality Bluetooth speaker
__________________
dean cosnett
0
Ready_Ornot

Registered:
Posts: 15
Reply with quote  #29 
Hey Cozo, just read the article. Wow, you were their first, huh" brave man. And at a " non profit" to boot. That proves how desparate we become to get relief. Im happy for you. Jealous and happy.. Im looking at 2 cross country flights myself if my insurance comes through.
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.



This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No self solicitation of goods or services. 4 No discriminatory remarks based on race, gender, or religion. 5. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.