Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 I don't hear as well as I used to, and I believe it is due to the constant ear noise and ringing that I have. Cheri hearing loss > Hi Everyone, > I would to ask if any of you have suffered from > hearing loss? My youngest son has lost some of his > hearing in his left ear. He is seeing a specialest for > it. None of our children have been tested for ACM but > I'm really thinking maybe I need to press our pcp > harder for the testing. Thanks and God bless,Terry in Maine > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 I don't hear as well as I used to, and I believe it is due to the constant ear noise and ringing that I have. Cheri hearing loss > Hi Everyone, > I would to ask if any of you have suffered from > hearing loss? My youngest son has lost some of his > hearing in his left ear. He is seeing a specialest for > it. None of our children have been tested for ACM but > I'm really thinking maybe I need to press our pcp > harder for the testing. Thanks and God bless,Terry in Maine > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 I don't hear as well as I used to, and I believe it is due to the constant ear noise and ringing that I have. Cheri hearing loss > Hi Everyone, > I would to ask if any of you have suffered from > hearing loss? My youngest son has lost some of his > hearing in his left ear. He is seeing a specialest for > it. None of our children have been tested for ACM but > I'm really thinking maybe I need to press our pcp > harder for the testing. Thanks and God bless,Terry in Maine > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 --- The Hansen Family wrote: > I don't hear as well as I used to, and I believe it > is due to the constant > ear noise and ringing that I have. > Cheri > hearing loss > > > > Hi Everyone, > > I would to ask if any of you have suffered > from > > hearing loss? My youngest son has lost some of his > > hearing in his left ear. He is seeing a specialest > for > > it. None of our children have been tested for ACM > but > > I'm really thinking maybe I need to press our pcp > > harder for the testing. Thanks and God bless,Terry > in Maine > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 --- The Hansen Family wrote: > I don't hear as well as I used to, and I believe it > is due to the constant > ear noise and ringing that I have. > Cheri > hearing loss > > > > Hi Everyone, > > I would to ask if any of you have suffered > from > > hearing loss? My youngest son has lost some of his > > hearing in his left ear. He is seeing a specialest > for > > it. None of our children have been tested for ACM > but > > I'm really thinking maybe I need to press our pcp > > harder for the testing. Thanks and God bless,Terry > in Maine > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 --- The Hansen Family wrote: > I don't hear as well as I used to, and I believe it > is due to the constant > ear noise and ringing that I have. > Cheri > hearing loss > > > > Hi Everyone, > > I would to ask if any of you have suffered > from > > hearing loss? My youngest son has lost some of his > > hearing in his left ear. He is seeing a specialest > for > > it. None of our children have been tested for ACM > but > > I'm really thinking maybe I need to press our pcp > > harder for the testing. Thanks and God bless,Terry > in Maine > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Terry - I have lost all hearing in my right ear and nearly all hearing in my left ear (hearing aid). Also have loud tinnitus in right ear. That was how they found my chiari - they were checking out the hearing loss. Hope this helps. Hugs and Prayers Edith KY On Thu, 7 Mar 2002 10:46:32 -0800 (PST) terry wills writes: > , > I would to ask if any of you have suffered from > hearing loss? > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Terry - I have lost all hearing in my right ear and nearly all hearing in my left ear (hearing aid). Also have loud tinnitus in right ear. That was how they found my chiari - they were checking out the hearing loss. Hope this helps. Hugs and Prayers Edith KY On Thu, 7 Mar 2002 10:46:32 -0800 (PST) terry wills writes: > , > I would to ask if any of you have suffered from > hearing loss? > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Terry - I have lost all hearing in my right ear and nearly all hearing in my left ear (hearing aid). Also have loud tinnitus in right ear. That was how they found my chiari - they were checking out the hearing loss. Hope this helps. Hugs and Prayers Edith KY On Thu, 7 Mar 2002 10:46:32 -0800 (PST) terry wills writes: > , > I would to ask if any of you have suffered from > hearing loss? > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 Hi All, Hello Ellen, in one of the posts you have mentioned that your hearing loss became worse over three years. What kind of hearing loss do you have. and do you know the reason for the deterioration. Chantelle, is BAHA mainly for conductive hearing loss. For mild to moderate sensorineural hearing loss, how worse could be noise distortion. ANybody have any thoughts. Thanks Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 I was told that BAHA is only good for conductive loss, not sensoneural. les x > Hi All, > Hello Ellen, > in one of the posts you have mentioned that your hearing loss became worse > over three years. > What kind of hearing loss do you have. > and do you know the reason for the deterioration. > > Chantelle, is BAHA mainly for conductive hearing loss. > > For mild to moderate sensorineural hearing loss, how worse could be noise > distortion. ANybody have any thoughts. > > Thanks > Rita > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 I was told that BAHA is only good for conductive loss, not sensoneural. les x > Hi All, > Hello Ellen, > in one of the posts you have mentioned that your hearing loss became worse > over three years. > What kind of hearing loss do you have. > and do you know the reason for the deterioration. > > Chantelle, is BAHA mainly for conductive hearing loss. > > For mild to moderate sensorineural hearing loss, how worse could be noise > distortion. ANybody have any thoughts. > > Thanks > Rita > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 ive got both conductive and sensory neural its the lower pitches that have gone down by up to twenty defabels wich is concerning so we are seeing the ent on tues will update on wat he says > > I was told that BAHA is only good for conductive loss, not sensoneural. > les x > > > > Hi All, > > Hello Ellen, > > in one of the posts you have mentioned that your hearing loss became > worse > > over three years. > > What kind of hearing loss do you have. > > and do you know the reason for the deterioration. > > > > Chantelle, is BAHA mainly for conductive hearing loss. > > > > For mild to moderate sensorineural hearing loss, how worse could be > noise > > distortion. ANybody have any thoughts. > > > > Thanks > > Rita > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 ive got both conductive and sensory neural its the lower pitches that have gone down by up to twenty defabels wich is concerning so we are seeing the ent on tues will update on wat he says > > I was told that BAHA is only good for conductive loss, not sensoneural. > les x > > > > Hi All, > > Hello Ellen, > > in one of the posts you have mentioned that your hearing loss became > worse > > over three years. > > What kind of hearing loss do you have. > > and do you know the reason for the deterioration. > > > > Chantelle, is BAHA mainly for conductive hearing loss. > > > > For mild to moderate sensorineural hearing loss, how worse could be > noise > > distortion. ANybody have any thoughts. > > > > Thanks > > Rita > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 ive got both conductive and sensory neural its the lower pitches that have gone down by up to twenty defabels wich is concerning so we are seeing the ent on tues will update on wat he says > > I was told that BAHA is only good for conductive loss, not sensoneural. > les x > > > > Hi All, > > Hello Ellen, > > in one of the posts you have mentioned that your hearing loss became > worse > > over three years. > > What kind of hearing loss do you have. > > and do you know the reason for the deterioration. > > > > Chantelle, is BAHA mainly for conductive hearing loss. > > > > For mild to moderate sensorineural hearing loss, how worse could be > noise > > distortion. ANybody have any thoughts. > > > > Thanks > > Rita > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Rita, We have been investigating the BAHA for Patty. Her ENT isn't going down that road with us but we are trying our best to get him there. As I understand it a BAHA is ONLY for those with a conductive loss and not a sensorineural loss. Patty has both. CHARGE in itself is not a progressive loss in nature. Though because of Patty's submucus cleft her Eustachian tubes do not work correctly so this makes the inner ear suck down the eardrum. It also doesn't allow drainage. She also always has had a flat tympanogram. Patty has also had her hearing bones reconstructed as they were fused. In addition to this her nerves are not the same as everyone else's. It gets so confusing. With that she has had numerous PE tubes, of all sizes, shapes, and materials. They didn't work. Because of having a large amount of fluid, sinus problems, and chronic otitus media (ear infections) her hearing has decreased substantially. She's lost the hearing in her left and the right is now decreasing as well. Keeping her ears dry and clean has been the best preventative method of keeping her ears healthy. But lately we don't seem to be doing well with that. Her ears are almost constantly infected. That's why she's having surgery soon. The infections have entered her mastoid and we just can't clear it out. She's also been on so many antibiotics they no longer work. We're stuck between a rock and a hard place. We've got to stop the infections and we have to find a way for her to have optimal hearing. The doctor wants to stop the infections first and then maybe look at the BAHA. I want to go the other way around. He's not happy with me and I'm not happy at all. He thinks because she hasn't had ear drums since she was around age 9 her make up might have changed. (She's 21) As a person grows their Eustachian tube angle changes with growth. Hers just might work now. Hmmm We are confused. We think the BAHA would be the best for her as it would get the mold out of her right ear and allow it to drain. With the hearing aid in that collects moisture and doesn't allow drainage. But the infections have been in both ears and she only wears an aid in one. The ENT is admit that the infections have been coming from outside the ear (like swimmers ear) from allergens. Patty isn't a candidate for a cochlear implant as hers isn't made correctly for it. When they test her hearing she has good responses to the bone conductive testing so we know she would do well with a BAHA. Or at least that is what I expect. Right now Patty is insistent in not having a BAHA. Getting her and the doctors there with me is another thing entirely. Do not get afraid of this. Not all children who have CHARGE have a progressive hearing loss. I would imagine that that is a rare condition really. Apparently if your child doesn't have the cleft or submucus cleft then the Eustachian tube dysfunction leading to chronic otitus media isn't an issue. Therefore the hearing should remain absolutely stable. If your child does have these then there are still ways to protect the hearing. The most important is keeping the ears dry. Patty wears earplugs even to shower or bathe. She wears them along with something called an ear bandit when she swims. You know the saying, an ounce of prevention..... Remember CHARGE is not a diagnosis that leads to a progressive hearing loss. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Rita, We have been investigating the BAHA for Patty. Her ENT isn't going down that road with us but we are trying our best to get him there. As I understand it a BAHA is ONLY for those with a conductive loss and not a sensorineural loss. Patty has both. CHARGE in itself is not a progressive loss in nature. Though because of Patty's submucus cleft her Eustachian tubes do not work correctly so this makes the inner ear suck down the eardrum. It also doesn't allow drainage. She also always has had a flat tympanogram. Patty has also had her hearing bones reconstructed as they were fused. In addition to this her nerves are not the same as everyone else's. It gets so confusing. With that she has had numerous PE tubes, of all sizes, shapes, and materials. They didn't work. Because of having a large amount of fluid, sinus problems, and chronic otitus media (ear infections) her hearing has decreased substantially. She's lost the hearing in her left and the right is now decreasing as well. Keeping her ears dry and clean has been the best preventative method of keeping her ears healthy. But lately we don't seem to be doing well with that. Her ears are almost constantly infected. That's why she's having surgery soon. The infections have entered her mastoid and we just can't clear it out. She's also been on so many antibiotics they no longer work. We're stuck between a rock and a hard place. We've got to stop the infections and we have to find a way for her to have optimal hearing. The doctor wants to stop the infections first and then maybe look at the BAHA. I want to go the other way around. He's not happy with me and I'm not happy at all. He thinks because she hasn't had ear drums since she was around age 9 her make up might have changed. (She's 21) As a person grows their Eustachian tube angle changes with growth. Hers just might work now. Hmmm We are confused. We think the BAHA would be the best for her as it would get the mold out of her right ear and allow it to drain. With the hearing aid in that collects moisture and doesn't allow drainage. But the infections have been in both ears and she only wears an aid in one. The ENT is admit that the infections have been coming from outside the ear (like swimmers ear) from allergens. Patty isn't a candidate for a cochlear implant as hers isn't made correctly for it. When they test her hearing she has good responses to the bone conductive testing so we know she would do well with a BAHA. Or at least that is what I expect. Right now Patty is insistent in not having a BAHA. Getting her and the doctors there with me is another thing entirely. Do not get afraid of this. Not all children who have CHARGE have a progressive hearing loss. I would imagine that that is a rare condition really. Apparently if your child doesn't have the cleft or submucus cleft then the Eustachian tube dysfunction leading to chronic otitus media isn't an issue. Therefore the hearing should remain absolutely stable. If your child does have these then there are still ways to protect the hearing. The most important is keeping the ears dry. Patty wears earplugs even to shower or bathe. She wears them along with something called an ear bandit when she swims. You know the saying, an ounce of prevention..... Remember CHARGE is not a diagnosis that leads to a progressive hearing loss. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Rita, We have been investigating the BAHA for Patty. Her ENT isn't going down that road with us but we are trying our best to get him there. As I understand it a BAHA is ONLY for those with a conductive loss and not a sensorineural loss. Patty has both. CHARGE in itself is not a progressive loss in nature. Though because of Patty's submucus cleft her Eustachian tubes do not work correctly so this makes the inner ear suck down the eardrum. It also doesn't allow drainage. She also always has had a flat tympanogram. Patty has also had her hearing bones reconstructed as they were fused. In addition to this her nerves are not the same as everyone else's. It gets so confusing. With that she has had numerous PE tubes, of all sizes, shapes, and materials. They didn't work. Because of having a large amount of fluid, sinus problems, and chronic otitus media (ear infections) her hearing has decreased substantially. She's lost the hearing in her left and the right is now decreasing as well. Keeping her ears dry and clean has been the best preventative method of keeping her ears healthy. But lately we don't seem to be doing well with that. Her ears are almost constantly infected. That's why she's having surgery soon. The infections have entered her mastoid and we just can't clear it out. She's also been on so many antibiotics they no longer work. We're stuck between a rock and a hard place. We've got to stop the infections and we have to find a way for her to have optimal hearing. The doctor wants to stop the infections first and then maybe look at the BAHA. I want to go the other way around. He's not happy with me and I'm not happy at all. He thinks because she hasn't had ear drums since she was around age 9 her make up might have changed. (She's 21) As a person grows their Eustachian tube angle changes with growth. Hers just might work now. Hmmm We are confused. We think the BAHA would be the best for her as it would get the mold out of her right ear and allow it to drain. With the hearing aid in that collects moisture and doesn't allow drainage. But the infections have been in both ears and she only wears an aid in one. The ENT is admit that the infections have been coming from outside the ear (like swimmers ear) from allergens. Patty isn't a candidate for a cochlear implant as hers isn't made correctly for it. When they test her hearing she has good responses to the bone conductive testing so we know she would do well with a BAHA. Or at least that is what I expect. Right now Patty is insistent in not having a BAHA. Getting her and the doctors there with me is another thing entirely. Do not get afraid of this. Not all children who have CHARGE have a progressive hearing loss. I would imagine that that is a rare condition really. Apparently if your child doesn't have the cleft or submucus cleft then the Eustachian tube dysfunction leading to chronic otitus media isn't an issue. Therefore the hearing should remain absolutely stable. If your child does have these then there are still ways to protect the hearing. The most important is keeping the ears dry. Patty wears earplugs even to shower or bathe. She wears them along with something called an ear bandit when she swims. You know the saying, an ounce of prevention..... Remember CHARGE is not a diagnosis that leads to a progressive hearing loss. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Turk22082@... to CHARGE >We are confused. We think the BAHA would be the best for her as it would get >the mold out of her right ear and allow it to drain. With the hearing aid in >that collects moisture and doesn't allow drainage. But the infections have >been in both ears and she only wears an aid in one. The ENT is admit that the >infections have been coming from outside the ear (like swimmers ear) from >allergens. Bonnie, Kennedy had constant ear infections with the digital BTE aids in her ears. As soon as we got those out, the infections stopped. It was so wonderful, and her ears didn't stink anymore... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 bonnie you know i have told you heaps of times when ever i read aobut patty i see me do you see her in me well i have a hole in one ear drum my eustation tubes are funn they dontdrain well would it help if you got an audiologist to fit patty with a baha hearing aid that u take of at night thats what ive got my ears never drained right and now the moulds nto in them i have less infections you kbnow me and patty could be twins LOL as for the hearing loss mine has dropped in three years coz thats how long since ive had a test one time it went down i had a salt problem now we dont know the course and its wed we r seeing ent about it in the left ear you cant see the ear drum the right you can and thats my good ear we dthink im a candicate for coclear and defiately for baha but then with me i have drums patty doesnt so i guess thats wat it is with us but i still do have both sensory neural and conductive ive got no semi ciruclar canals ellen > > Rita, > > We have been investigating the BAHA for Patty. Her ENT isn't going down > that > road with us but we are trying our best to get him there. > > As I understand it a BAHA is ONLY for those with a conductive loss and not > a > sensorineural loss. > > Patty has both. CHARGE in itself is not a progressive loss in nature. > Though because of Patty's submucus cleft her Eustachian tubes do not work > correctly > so this makes the inner ear suck down the eardrum. It also doesn't allow > drainage. She also always has had a flat tympanogram. Patty has also had > her > hearing bones reconstructed as they were fused. In addition to this her > nerves > are not the same as everyone else's. It gets so confusing. > > With that she has had numerous PE tubes, of all sizes, shapes, and > materials. > They didn't work. Because of having a large amount of fluid, sinus > problems, and chronic otitus media (ear infections) her hearing has > decreased > substantially. She's lost the hearing in her left and the right is now > decreasing as > well. > > Keeping her ears dry and clean has been the best preventative method of > keeping her ears healthy. But lately we don't seem to be doing well with > that. > Her ears are almost constantly infected. That's why she's having surgery > soon. > The infections have entered her mastoid and we just can't clear it out. > She's also been on so many antibiotics they no longer work. We're stuck > between a > rock and a hard place. We've got to stop the infections and we have to > find > a way for her to have optimal hearing. The doctor wants to stop the > infections first and then maybe look at the BAHA. I want to go the other > way around. > He's not happy with me and I'm not happy at all. He thinks because she > hasn't > had ear drums since she was around age 9 her make up might have changed. > (She's 21) As a person grows their Eustachian tube angle changes with > growth. > Hers just might work now. Hmmm > > We are confused. We think the BAHA would be the best for her as it would > get > the mold out of her right ear and allow it to drain. With the hearing aid > in > that collects moisture and doesn't allow drainage. But the infections > have > been in both ears and she only wears an aid in one. The ENT is admit that > the > infections have been coming from outside the ear (like swimmers ear) from > allergens. > > Patty isn't a candidate for a cochlear implant as hers isn't made > correctly > for it. When they test her hearing she has good responses to the bone > conductive testing so we know she would do well with a BAHA. Or at least > that is what > I expect. Right now Patty is insistent in not having a BAHA. Getting her > and > the doctors there with me is another thing entirely. > > Do not get afraid of this. Not all children who have CHARGE have a > progressive hearing loss. I would imagine that that is a rare condition > really. > Apparently if your child doesn't have the cleft or submucus cleft then the > Eustachian tube dysfunction leading to chronic otitus media isn't an > issue. Therefore > the hearing should remain absolutely stable. > > If your child does have these then there are still ways to protect the > hearing. The most important is keeping the ears dry. Patty wears > earplugs even to > shower or bathe. She wears them along with something called an ear bandit > when she swims. > > You know the saying, an ounce of prevention..... > > Remember CHARGE is not a diagnosis that leads to a progressive hearing > loss. > > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 bonnie you know i have told you heaps of times when ever i read aobut patty i see me do you see her in me well i have a hole in one ear drum my eustation tubes are funn they dontdrain well would it help if you got an audiologist to fit patty with a baha hearing aid that u take of at night thats what ive got my ears never drained right and now the moulds nto in them i have less infections you kbnow me and patty could be twins LOL as for the hearing loss mine has dropped in three years coz thats how long since ive had a test one time it went down i had a salt problem now we dont know the course and its wed we r seeing ent about it in the left ear you cant see the ear drum the right you can and thats my good ear we dthink im a candicate for coclear and defiately for baha but then with me i have drums patty doesnt so i guess thats wat it is with us but i still do have both sensory neural and conductive ive got no semi ciruclar canals ellen > > Rita, > > We have been investigating the BAHA for Patty. Her ENT isn't going down > that > road with us but we are trying our best to get him there. > > As I understand it a BAHA is ONLY for those with a conductive loss and not > a > sensorineural loss. > > Patty has both. CHARGE in itself is not a progressive loss in nature. > Though because of Patty's submucus cleft her Eustachian tubes do not work > correctly > so this makes the inner ear suck down the eardrum. It also doesn't allow > drainage. She also always has had a flat tympanogram. Patty has also had > her > hearing bones reconstructed as they were fused. In addition to this her > nerves > are not the same as everyone else's. It gets so confusing. > > With that she has had numerous PE tubes, of all sizes, shapes, and > materials. > They didn't work. Because of having a large amount of fluid, sinus > problems, and chronic otitus media (ear infections) her hearing has > decreased > substantially. She's lost the hearing in her left and the right is now > decreasing as > well. > > Keeping her ears dry and clean has been the best preventative method of > keeping her ears healthy. But lately we don't seem to be doing well with > that. > Her ears are almost constantly infected. That's why she's having surgery > soon. > The infections have entered her mastoid and we just can't clear it out. > She's also been on so many antibiotics they no longer work. We're stuck > between a > rock and a hard place. We've got to stop the infections and we have to > find > a way for her to have optimal hearing. The doctor wants to stop the > infections first and then maybe look at the BAHA. I want to go the other > way around. > He's not happy with me and I'm not happy at all. He thinks because she > hasn't > had ear drums since she was around age 9 her make up might have changed. > (She's 21) As a person grows their Eustachian tube angle changes with > growth. > Hers just might work now. Hmmm > > We are confused. We think the BAHA would be the best for her as it would > get > the mold out of her right ear and allow it to drain. With the hearing aid > in > that collects moisture and doesn't allow drainage. But the infections > have > been in both ears and she only wears an aid in one. The ENT is admit that > the > infections have been coming from outside the ear (like swimmers ear) from > allergens. > > Patty isn't a candidate for a cochlear implant as hers isn't made > correctly > for it. When they test her hearing she has good responses to the bone > conductive testing so we know she would do well with a BAHA. Or at least > that is what > I expect. Right now Patty is insistent in not having a BAHA. Getting her > and > the doctors there with me is another thing entirely. > > Do not get afraid of this. Not all children who have CHARGE have a > progressive hearing loss. I would imagine that that is a rare condition > really. > Apparently if your child doesn't have the cleft or submucus cleft then the > Eustachian tube dysfunction leading to chronic otitus media isn't an > issue. Therefore > the hearing should remain absolutely stable. > > If your child does have these then there are still ways to protect the > hearing. The most important is keeping the ears dry. Patty wears > earplugs even to > shower or bathe. She wears them along with something called an ear bandit > when she swims. > > You know the saying, an ounce of prevention..... > > Remember CHARGE is not a diagnosis that leads to a progressive hearing > loss. > > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 bonnie you know i have told you heaps of times when ever i read aobut patty i see me do you see her in me well i have a hole in one ear drum my eustation tubes are funn they dontdrain well would it help if you got an audiologist to fit patty with a baha hearing aid that u take of at night thats what ive got my ears never drained right and now the moulds nto in them i have less infections you kbnow me and patty could be twins LOL as for the hearing loss mine has dropped in three years coz thats how long since ive had a test one time it went down i had a salt problem now we dont know the course and its wed we r seeing ent about it in the left ear you cant see the ear drum the right you can and thats my good ear we dthink im a candicate for coclear and defiately for baha but then with me i have drums patty doesnt so i guess thats wat it is with us but i still do have both sensory neural and conductive ive got no semi ciruclar canals ellen > > Rita, > > We have been investigating the BAHA for Patty. Her ENT isn't going down > that > road with us but we are trying our best to get him there. > > As I understand it a BAHA is ONLY for those with a conductive loss and not > a > sensorineural loss. > > Patty has both. CHARGE in itself is not a progressive loss in nature. > Though because of Patty's submucus cleft her Eustachian tubes do not work > correctly > so this makes the inner ear suck down the eardrum. It also doesn't allow > drainage. She also always has had a flat tympanogram. Patty has also had > her > hearing bones reconstructed as they were fused. In addition to this her > nerves > are not the same as everyone else's. It gets so confusing. > > With that she has had numerous PE tubes, of all sizes, shapes, and > materials. > They didn't work. Because of having a large amount of fluid, sinus > problems, and chronic otitus media (ear infections) her hearing has > decreased > substantially. She's lost the hearing in her left and the right is now > decreasing as > well. > > Keeping her ears dry and clean has been the best preventative method of > keeping her ears healthy. But lately we don't seem to be doing well with > that. > Her ears are almost constantly infected. That's why she's having surgery > soon. > The infections have entered her mastoid and we just can't clear it out. > She's also been on so many antibiotics they no longer work. We're stuck > between a > rock and a hard place. We've got to stop the infections and we have to > find > a way for her to have optimal hearing. The doctor wants to stop the > infections first and then maybe look at the BAHA. I want to go the other > way around. > He's not happy with me and I'm not happy at all. He thinks because she > hasn't > had ear drums since she was around age 9 her make up might have changed. > (She's 21) As a person grows their Eustachian tube angle changes with > growth. > Hers just might work now. Hmmm > > We are confused. We think the BAHA would be the best for her as it would > get > the mold out of her right ear and allow it to drain. With the hearing aid > in > that collects moisture and doesn't allow drainage. But the infections > have > been in both ears and she only wears an aid in one. The ENT is admit that > the > infections have been coming from outside the ear (like swimmers ear) from > allergens. > > Patty isn't a candidate for a cochlear implant as hers isn't made > correctly > for it. When they test her hearing she has good responses to the bone > conductive testing so we know she would do well with a BAHA. Or at least > that is what > I expect. Right now Patty is insistent in not having a BAHA. Getting her > and > the doctors there with me is another thing entirely. > > Do not get afraid of this. Not all children who have CHARGE have a > progressive hearing loss. I would imagine that that is a rare condition > really. > Apparently if your child doesn't have the cleft or submucus cleft then the > Eustachian tube dysfunction leading to chronic otitus media isn't an > issue. Therefore > the hearing should remain absolutely stable. > > If your child does have these then there are still ways to protect the > hearing. The most important is keeping the ears dry. Patty wears > earplugs even to > shower or bathe. She wears them along with something called an ear bandit > when she swims. > > You know the saying, an ounce of prevention..... > > Remember CHARGE is not a diagnosis that leads to a progressive hearing > loss. > > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 lisa digital never worked for me coz it never suited my loss or so the audio ladys said life in charge is complex but fun > > bonnie you know i have told you heaps of times when ever i read aobut > patty i see me do you see her in me well i have a hole in one ear drum my > eustation tubes are funn they dontdrain well would it help if you got an > audiologist to fit patty with a baha hearing aid that u take of at night > thats what ive got my ears never drained right and now the moulds nto in > them i have less infections you kbnow me and patty could be twins LOL as for > the hearing loss mine has dropped in three years coz thats how long since > ive had a test one time it went down i had a salt problem now we dont know > the course and its wed we r seeing ent about it in the left ear you cant see > the ear drum the right you can and thats my good ear we dthink im a > candicate for coclear and defiately for baha but then with me i have drums > patty doesnt so i guess thats wat it is with us but i still do have both > sensory neural and conductive ive got no semi ciruclar canals ellen > > > > > > > Rita, > > > > We have been investigating the BAHA for Patty. Her ENT isn't going down > > that > > road with us but we are trying our best to get him there. > > > > As I understand it a BAHA is ONLY for those with a conductive loss and > > not a > > sensorineural loss. > > > > Patty has both. CHARGE in itself is not a progressive loss in nature. > > Though because of Patty's submucus cleft her Eustachian tubes do not > > work correctly > > so this makes the inner ear suck down the eardrum. It also doesn't > > allow > > drainage. She also always has had a flat tympanogram. Patty has also > > had her > > hearing bones reconstructed as they were fused. In addition to this her > > nerves > > are not the same as everyone else's. It gets so confusing. > > > > With that she has had numerous PE tubes, of all sizes, shapes, and > > materials. > > They didn't work. Because of having a large amount of fluid, sinus > > problems, and chronic otitus media (ear infections) her hearing has > > decreased > > substantially. She's lost the hearing in her left and the right is now > > decreasing as > > well. > > > > Keeping her ears dry and clean has been the best preventative method of > > keeping her ears healthy. But lately we don't seem to be doing well > > with that. > > Her ears are almost constantly infected. That's why she's having > > surgery soon. > > The infections have entered her mastoid and we just can't clear it out. > > She's also been on so many antibiotics they no longer work. We're stuck > > between a > > rock and a hard place. We've got to stop the infections and we have to > > find > > a way for her to have optimal hearing. The doctor wants to stop the > > infections first and then maybe look at the BAHA. I want to go the > > other way around. > > He's not happy with me and I'm not happy at all. He thinks because she > > hasn't > > had ear drums since she was around age 9 her make up might have changed. > > > > (She's 21) As a person grows their Eustachian tube angle changes with > > growth. > > Hers just might work now. Hmmm > > > > We are confused. We think the BAHA would be the best for her as it > > would get > > the mold out of her right ear and allow it to drain. With the hearing > > aid in > > that collects moisture and doesn't allow drainage. But the infections > > have > > been in both ears and she only wears an aid in one. The ENT is admit > > that the > > infections have been coming from outside the ear (like swimmers ear) > > from > > allergens. > > > > Patty isn't a candidate for a cochlear implant as hers isn't made > > correctly > > for it. When they test her hearing she has good responses to the bone > > conductive testing so we know she would do well with a BAHA. Or at > > least that is what > > I expect. Right now Patty is insistent in not having a BAHA. Getting > > her and > > the doctors there with me is another thing entirely. > > > > Do not get afraid of this. Not all children who have CHARGE have a > > progressive hearing loss. I would imagine that that is a rare condition > > really. > > Apparently if your child doesn't have the cleft or submucus cleft then > > the > > Eustachian tube dysfunction leading to chronic otitus media isn't an > > issue. Therefore > > the hearing should remain absolutely stable. > > > > If your child does have these then there are still ways to protect the > > hearing. The most important is keeping the ears dry. Patty wears > > earplugs even to > > shower or bathe. She wears them along with something called an ear > > bandit > > when she swims. > > > > You know the saying, an ounce of prevention..... > > > > Remember CHARGE is not a diagnosis that leads to a progressive hearing > > loss. > > > > > > > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 lisa digital never worked for me coz it never suited my loss or so the audio ladys said life in charge is complex but fun > > bonnie you know i have told you heaps of times when ever i read aobut > patty i see me do you see her in me well i have a hole in one ear drum my > eustation tubes are funn they dontdrain well would it help if you got an > audiologist to fit patty with a baha hearing aid that u take of at night > thats what ive got my ears never drained right and now the moulds nto in > them i have less infections you kbnow me and patty could be twins LOL as for > the hearing loss mine has dropped in three years coz thats how long since > ive had a test one time it went down i had a salt problem now we dont know > the course and its wed we r seeing ent about it in the left ear you cant see > the ear drum the right you can and thats my good ear we dthink im a > candicate for coclear and defiately for baha but then with me i have drums > patty doesnt so i guess thats wat it is with us but i still do have both > sensory neural and conductive ive got no semi ciruclar canals ellen > > > > > > > Rita, > > > > We have been investigating the BAHA for Patty. Her ENT isn't going down > > that > > road with us but we are trying our best to get him there. > > > > As I understand it a BAHA is ONLY for those with a conductive loss and > > not a > > sensorineural loss. > > > > Patty has both. CHARGE in itself is not a progressive loss in nature. > > Though because of Patty's submucus cleft her Eustachian tubes do not > > work correctly > > so this makes the inner ear suck down the eardrum. It also doesn't > > allow > > drainage. She also always has had a flat tympanogram. Patty has also > > had her > > hearing bones reconstructed as they were fused. In addition to this her > > nerves > > are not the same as everyone else's. It gets so confusing. > > > > With that she has had numerous PE tubes, of all sizes, shapes, and > > materials. > > They didn't work. Because of having a large amount of fluid, sinus > > problems, and chronic otitus media (ear infections) her hearing has > > decreased > > substantially. She's lost the hearing in her left and the right is now > > decreasing as > > well. > > > > Keeping her ears dry and clean has been the best preventative method of > > keeping her ears healthy. But lately we don't seem to be doing well > > with that. > > Her ears are almost constantly infected. That's why she's having > > surgery soon. > > The infections have entered her mastoid and we just can't clear it out. > > She's also been on so many antibiotics they no longer work. We're stuck > > between a > > rock and a hard place. We've got to stop the infections and we have to > > find > > a way for her to have optimal hearing. The doctor wants to stop the > > infections first and then maybe look at the BAHA. I want to go the > > other way around. > > He's not happy with me and I'm not happy at all. He thinks because she > > hasn't > > had ear drums since she was around age 9 her make up might have changed. > > > > (She's 21) As a person grows their Eustachian tube angle changes with > > growth. > > Hers just might work now. Hmmm > > > > We are confused. We think the BAHA would be the best for her as it > > would get > > the mold out of her right ear and allow it to drain. With the hearing > > aid in > > that collects moisture and doesn't allow drainage. But the infections > > have > > been in both ears and she only wears an aid in one. The ENT is admit > > that the > > infections have been coming from outside the ear (like swimmers ear) > > from > > allergens. > > > > Patty isn't a candidate for a cochlear implant as hers isn't made > > correctly > > for it. When they test her hearing she has good responses to the bone > > conductive testing so we know she would do well with a BAHA. Or at > > least that is what > > I expect. Right now Patty is insistent in not having a BAHA. Getting > > her and > > the doctors there with me is another thing entirely. > > > > Do not get afraid of this. Not all children who have CHARGE have a > > progressive hearing loss. I would imagine that that is a rare condition > > really. > > Apparently if your child doesn't have the cleft or submucus cleft then > > the > > Eustachian tube dysfunction leading to chronic otitus media isn't an > > issue. Therefore > > the hearing should remain absolutely stable. > > > > If your child does have these then there are still ways to protect the > > hearing. The most important is keeping the ears dry. Patty wears > > earplugs even to > > shower or bathe. She wears them along with something called an ear > > bandit > > when she swims. > > > > You know the saying, an ounce of prevention..... > > > > Remember CHARGE is not a diagnosis that leads to a progressive hearing > > loss. > > > > > > > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 lisa digital never worked for me coz it never suited my loss or so the audio ladys said life in charge is complex but fun > > bonnie you know i have told you heaps of times when ever i read aobut > patty i see me do you see her in me well i have a hole in one ear drum my > eustation tubes are funn they dontdrain well would it help if you got an > audiologist to fit patty with a baha hearing aid that u take of at night > thats what ive got my ears never drained right and now the moulds nto in > them i have less infections you kbnow me and patty could be twins LOL as for > the hearing loss mine has dropped in three years coz thats how long since > ive had a test one time it went down i had a salt problem now we dont know > the course and its wed we r seeing ent about it in the left ear you cant see > the ear drum the right you can and thats my good ear we dthink im a > candicate for coclear and defiately for baha but then with me i have drums > patty doesnt so i guess thats wat it is with us but i still do have both > sensory neural and conductive ive got no semi ciruclar canals ellen > > > > > > > Rita, > > > > We have been investigating the BAHA for Patty. Her ENT isn't going down > > that > > road with us but we are trying our best to get him there. > > > > As I understand it a BAHA is ONLY for those with a conductive loss and > > not a > > sensorineural loss. > > > > Patty has both. CHARGE in itself is not a progressive loss in nature. > > Though because of Patty's submucus cleft her Eustachian tubes do not > > work correctly > > so this makes the inner ear suck down the eardrum. It also doesn't > > allow > > drainage. She also always has had a flat tympanogram. Patty has also > > had her > > hearing bones reconstructed as they were fused. In addition to this her > > nerves > > are not the same as everyone else's. It gets so confusing. > > > > With that she has had numerous PE tubes, of all sizes, shapes, and > > materials. > > They didn't work. Because of having a large amount of fluid, sinus > > problems, and chronic otitus media (ear infections) her hearing has > > decreased > > substantially. She's lost the hearing in her left and the right is now > > decreasing as > > well. > > > > Keeping her ears dry and clean has been the best preventative method of > > keeping her ears healthy. But lately we don't seem to be doing well > > with that. > > Her ears are almost constantly infected. That's why she's having > > surgery soon. > > The infections have entered her mastoid and we just can't clear it out. > > She's also been on so many antibiotics they no longer work. We're stuck > > between a > > rock and a hard place. We've got to stop the infections and we have to > > find > > a way for her to have optimal hearing. The doctor wants to stop the > > infections first and then maybe look at the BAHA. I want to go the > > other way around. > > He's not happy with me and I'm not happy at all. He thinks because she > > hasn't > > had ear drums since she was around age 9 her make up might have changed. > > > > (She's 21) As a person grows their Eustachian tube angle changes with > > growth. > > Hers just might work now. Hmmm > > > > We are confused. We think the BAHA would be the best for her as it > > would get > > the mold out of her right ear and allow it to drain. With the hearing > > aid in > > that collects moisture and doesn't allow drainage. But the infections > > have > > been in both ears and she only wears an aid in one. The ENT is admit > > that the > > infections have been coming from outside the ear (like swimmers ear) > > from > > allergens. > > > > Patty isn't a candidate for a cochlear implant as hers isn't made > > correctly > > for it. When they test her hearing she has good responses to the bone > > conductive testing so we know she would do well with a BAHA. Or at > > least that is what > > I expect. Right now Patty is insistent in not having a BAHA. Getting > > her and > > the doctors there with me is another thing entirely. > > > > Do not get afraid of this. Not all children who have CHARGE have a > > progressive hearing loss. I would imagine that that is a rare condition > > really. > > Apparently if your child doesn't have the cleft or submucus cleft then > > the > > Eustachian tube dysfunction leading to chronic otitus media isn't an > > issue. Therefore > > the hearing should remain absolutely stable. > > > > If your child does have these then there are still ways to protect the > > hearing. The most important is keeping the ears dry. Patty wears > > earplugs even to > > shower or bathe. She wears them along with something called an ear > > bandit > > when she swims. > > > > You know the saying, an ounce of prevention..... > > > > Remember CHARGE is not a diagnosis that leads to a progressive hearing > > loss. > > > > > > > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
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