Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Clearly Dr. Hall is not very familiar with 4S. It isn't just soft sounds by any means, obviously effects plenty of adults, and is by no means limited to family members. And "a collection of complaints"?!? You've got to be kidding me!As with most new things, we clearly have our work cut out for us!Thanks for sharing!I got this email from Dr Hall at Univ of FLThe term selective sound sensitivity syndrome (4S) was coined by Marsha , although it's not really a syndrome but rather a collection of complaints. It is a very specific form of hyperacusis, almost always involving soft bodily sounds (e.g., chewing) of family members. My only experience with the problem has been with children, usually adolescents.I do not typically use TRT for the 4S problem, as the problem is not with loud sounds in general but, rather, a very limited selection of often quite low intensity sounds.There is no need to consult with an otolaryngologist (ENT) first.The diagnostic costs of the first visit (maybe the only one needed) are covered by health insurance. I can't cite a specific cost, but it would probably be in the range of $400 to 450.Treatment is individualized to each patient, and based on the results of the diagnostic assessment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Something that so deeply affects so many people's lives cannot be termed a " collection of complaints. " It isn't a complaint to flee from an eating family member, to have to restrain oneself from punching someone in a wheelchair who is eating like some sort of Lovecraftian monster (true story!), or to go to extreme lengths to change our day-to-day lives just to find ourselves some relief. PS, in my defense, the wheelchair was no excuse for such poor manners. The sound was actually so bad that my friend (who has signs of 4s) was visibly shaken, and I almost immediately told her to stop. Then backtracked, citing " really sensitive hearing " and the like. She stopped. > > > I got this email from Dr Hall at Univ of FL > > > > The term selective sound sensitivity syndrome (4S) was coined by > > Marsha , although it's not really a syndrome but rather a > > collection of complaints. It is a very specific form of hyperacusis, > > almost always involving soft bodily sounds (e.g., chewing) of family > > members. My only experience with the problem has been with children, > > usually adolescents. > > > > I do not typically use TRT for the 4S problem, as the problem is not > > with loud sounds in general but, rather, a very limited selection of > > often quite low intensity sounds. > > > > There is no need to consult with an otolaryngologist (ENT) first. > > > > The diagnostic costs of the first visit (maybe the only one needed) > > are covered by health insurance. I can't cite a specific cost, but it > > would probably be in the range of $400 to 450. > > > > Treatment is individualized to each patient, and based on the results > > of the diagnostic assessment. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Your story made me smile, thank you for that, i prob shouldn’t smile but I am all the same. Treatment for 400$ hmmm, now there are stories out there that are too good to be true but still, i wonder what is on offer... does anyone know? From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of cherrydoom2008 Sent: Thursday, 18 December 2008 5:32 PM To: Soundsensitivity Subject: Re: Univ of FL Something that so deeply affects so many people's lives cannot be termed a " collection of complaints. " It isn't a complaint to flee from an eating family member, to have to restrain oneself from punching someone in a wheelchair who is eating like some sort of Lovecraftian monster (true story!), or to go to extreme lengths to change our day-to-day lives just to find ourselves some relief. PS, in my defense, the wheelchair was no excuse for such poor manners. The sound was actually so bad that my friend (who has signs of 4s) was visibly shaken, and I almost immediately told her to stop. Then backtracked, citing " really sensitive hearing " and the like. She stopped. > > > I got this email from Dr Hall at Univ of FL > > > > The term selective sound sensitivity syndrome (4S) was coined by > > Marsha , although it's not really a syndrome but rather a > > collection of complaints. It is a very specific form of hyperacusis, > > almost always involving soft bodily sounds (e.g., chewing) of family > > members. My only experience with the problem has been with children, > > usually adolescents. > > > > I do not typically use TRT for the 4S problem, as the problem is not > > with loud sounds in general but, rather, a very limited selection of > > often quite low intensity sounds. > > > > There is no need to consult with an otolaryngologist (ENT) first. > > > > The diagnostic costs of the first visit (maybe the only one needed) > > are covered by health insurance. I can't cite a specific cost, but it > > would probably be in the range of $400 to 450. > > > > Treatment is individualized to each patient, and based on the results > > of the diagnostic assessment. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 It's not a complaint if it is causing you pain! That is what I don't understand about people who say how we respond to what we deal with is just a " collection of complaints. " I am not complaining when I speak up about a sound that is causing me pain in my ears and in my head and at times throughout my body. It affects my entire life and how well I'm able to do things and be around other human beings. I am trying to " inform " seeking help, rather than " complain " . I was silent about this " torture " called 4S, Hyperacusis etc. for far too long in my life. I am not sorry for speaking up setting a boundary for my own protection and well being. -Randall -----Original Message----- Something that so deeply affects so many people's lives cannot be termed a " collection of complaints. " It isn't a complaint to flee from an eating family member, to have to restrain oneself from punching someone in a wheelchair who is eating like some sort of Lovecraftian monster (true story!), or to go to extreme lengths to change our day-to-day lives just to find ourselves some relief. PS, in my defense, the wheelchair was no excuse for such poor manners. The sound was actually so bad that my friend (who has signs of 4s) was visibly shaken, and I almost immediately told her to stop. Then backtracked, citing " really sensitive hearing " and the like. She stopped. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 It really does offend me to hear it referred to as a set of " complaints. " It just brings me right back to when my parents would tell me to just get over it, or when friends would tell me to focus on something else or to lighten up. We have no control over what hurts us... and it does hurt us. Definitely emotionally, and often physically. Saying it's a complaint just makes it sound like we're whining about other people's actions when we're just trying to keep ourselves from getting hurt, or from hurting others with our reactions to/attitudes toward them. I'm glad to hear you won't take any more of this.. because I won't either. Sure, I'll be polite. But I won't ever let anyone try to convince me it's just a complaint, or it's just in my head, or I'm just being mean to be mean. This is something. And it's something we need explained. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Randall just a note when I write medical evaluations and reports the word complaint is used to mean what the person says they are experiencing. It is not used in the sense, He complained about not having enough fudge in his stocking.... Don't be offended by this word in the world of medicine. It is a common use for simply stating what the sufferer says. MJ > > It's not a complaint if it is causing you pain! That is what I don't > understand about people who say how we respond to what we deal with is > just a " collection of complaints. " > > I am not complaining when I speak up about a sound that is causing me > pain in my ears and in my head and at times throughout my body. It > affects my entire life and how well I'm able to do things and be around > other human beings. > > I am trying to " inform " seeking help, rather than " complain " . I was > silent about this " torture " called 4S, Hyperacusis etc. for far too long > in my life. I am not sorry for speaking up setting a boundary for my own > protection and well being. > > -Randall > > > -----Original Message----- > > > Something that so deeply affects so many people's lives cannot be > termed a " collection of complaints. " It isn't a complaint to flee from > an eating family member, to have to restrain oneself from punching > someone in a wheelchair who is eating like some sort of Lovecraftian > monster (true story!), or to go to extreme lengths to change our > day-to-day lives just to find ourselves some relief. > > PS, in my defense, the wheelchair was no excuse for such poor manners. > The sound was actually so bad that my friend (who has signs of 4s) was > visibly shaken, and I almost immediately told her to stop. Then > backtracked, citing " really sensitive hearing " and the like. She > stopped. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Thanks for clearing that up. I wasn't quite sure how to take that myself. Dr. J said: " It is not used in the sense, He complained about not having enough fudge in his stocking " . Now THAT would be something to complain about! > > Randall just a note when I write medical evaluations and reports the > word complaint is used to mean what the person says they are > experiencing. It is not used in the sense, He complained about not > having enough fudge in his stocking.... > > Don't be offended by this word in the world of medicine. It is a > common use for simply stating what the sufferer says. > > MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 LOLThanks for clearing that up. I wasn't quite sure how to take thatmyself. Dr. J said: "It is not used in the sense, He complained aboutnot having enough fudge in his stocking". Now THAT would be somethingto complain about! >> Randall just a note when I write medical evaluations and reports the > word complaint is used to mean what the person says they are > experiencing. It is not used in the sense, He complained about not > having enough fudge in his stocking....> > Don't be offended by this word in the world of medicine. It is a > common use for simply stating what the sufferer says.> > MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Thanks for responding Dr. . From the medical perspective I can understand how the word complaint is being used. As a term that describes the affects one feels from their ailment. To the layman " complaint " has deeper roots to it as noted to my reaction to the word. I'm certainly not complaining about " not having enough fudge in my stocking " LOL so I see your point. I'll have to keep that in mind from now on. Thank you. -Randall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2008 Report Share Posted December 21, 2008 The cost to see him is $400- which I will have to pay because at the first of the year, I have a $400 deductible on my insurance. I have no clue what his treatment would consist of or how much it would cost. I know if I see a hearing aid person in south Florida, who says he treats 4S with the sound generators, it would be $2200........ > Your story made me smile, thank you for that, i prob shouldn't smile but I > am all the same. > > > > Treatment for 400$ hmmm, now there are stories out there that are too good > to be true but still, i wonder what is on offer... does anyone know? > > > > From: Soundsensitivity > [mailto:Soundsensitivity ] On Behalf Of cherrydoom2008 > Sent: Thursday, 18 December 2008 5:32 PM > To: Soundsensitivity > Subject: Re: Univ of FL > > > > Something that so deeply affects so many people's lives cannot be > termed a " collection of complaints. " It isn't a complaint to flee from > an eating family member, to have to restrain oneself from punching > someone in a wheelchair who is eating like some sort of Lovecraftian > monster (true story!), or to go to extreme lengths to change our > day-to-day lives just to find ourselves some relief. > > PS, in my defense, the wheelchair was no excuse for such poor manners. > The sound was actually so bad that my friend (who has signs of 4s) was > visibly shaken, and I almost immediately told her to stop. Then > backtracked, citing " really sensitive hearing " and the like. She > stopped. > > > > > > > I got this email from Dr Hall at Univ of FL > > > > > > The term selective sound sensitivity syndrome (4S) was coined by > > > Marsha , although it's not really a syndrome but rather a > > > collection of complaints. It is a very specific form of hyperacusis, > > > almost always involving soft bodily sounds (e.g., chewing) of family > > > members. My only experience with the problem has been with children, > > > usually adolescents. > > > > > > I do not typically use TRT for the 4S problem, as the problem is not > > > with loud sounds in general but, rather, a very limited selection of > > > often quite low intensity sounds. > > > > > > There is no need to consult with an otolaryngologist (ENT) first. > > > > > > The diagnostic costs of the first visit (maybe the only one needed) > > > are covered by health insurance. I can't cite a specific cost, but it > > > would probably be in the range of $400 to 450. > > > > > > Treatment is individualized to each patient, and based on the results > > > of the diagnostic assessment. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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