Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Sue- We are near St. Louis too. We are in west central IL but doctor in St Louis so we are there fairly often. Have we met already? Michele W mom to Aubrie (6 yrs) CHaRgE and (12 yrs) ear surgery I forgot who sent the info on ear surgery. I sent a reply last week but there was a problem with my CHARGE emails. Any way thanks for checking into that. My son had 3 ear surgeries here in St. Louis. We did not like how it turned out. I wish I had more info at that time about ear surgery. (A friend of mine has a niece who had it done and they were happy with her results). A year or so after my son had his surgeries, I found out about Dr. Brent. I met a young man who had the same problem as my son and Dr. Brent had done his ears. They looked great! Right now doesn't want another surgery, but when or if he does, I want to make sure it is worth it. That's why I wanted to see if anyone else had any info. By the way if you want to see Dr. Brent's web site go to earsurgery.com. Thanks, Sue mom to 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Just visited that website -- it's awesome!! We are just beginning to do the research before deciding when and where to have this done for Aubrie. I don't have time to view the entire site now, but from what I can see, it will be so helpful! Thanks-- Michele W Aubrie's mom ear surgery I forgot who sent the info on ear surgery. I sent a reply last week but there was a problem with my CHARGE emails. Any way thanks for checking into that. My son had 3 ear surgeries here in St. Louis. We did not like how it turned out. I wish I had more info at that time about ear surgery. (A friend of mine has a niece who had it done and they were happy with her results). A year or so after my son had his surgeries, I found out about Dr. Brent. I met a young man who had the same problem as my son and Dr. Brent had done his ears. They looked great! Right now doesn't want another surgery, but when or if he does, I want to make sure it is worth it. That's why I wanted to see if anyone else had any info. By the way if you want to see Dr. Brent's web site go to earsurgery.com. Thanks, Sue mom to 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi there I don't know all the history on this but I had my stapes bone " fixed. " Actually it ended up I didn't have one at all and they put in an artificial bone which did not result in better hearing. But that was in 1980 and I'm sure things are better now. Make sure they remember that the nerve in his face may not be where they expect it to be. Kay ear surgery > well we saw the ENT yesterday after testing Wesley's hearing on > bones and with masking he said we are good candidate for this > surgery to fix his hearing. he said its a matter of fixing one of > the bones and they are not sure which one tell they get in there. if > its one of the first two in the ear its fairly easy the third is > more complicated and the kids have to be holding still pretty much > for three days. he said they only do one at a time incase something > happens they do the worst ear first Wesley's worst ear shows > that he will go from about a 70 % loss in it to a 10% loss the > other ear could go to perfect hearing but if something happened > and we lost his good ear that would be really bad. so maybe as > early as some time in april we are having his worst ear operated > on. he is excited he keeps saying " I did good on my tests > No more hearing aids " > the ENT also sounded positive about getting our insurance to > pay for the teeth and stuff that we are working on. he will be > writing a letter and checking with some other specialists for us. I > wonder how much reminding its going to take to get all these letters > from Drs. I know they are not easy to get as the Drs. sound when > they say oh ya I will do that. > Take care everyone > KayRena who is wondering how many more things wes will pick up > from school when he doesn't miss part from loosing his hearing aids > so often . > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 thank you for the word of advice I will remember to mention that to the dr. kayRena Kay Lynd wrote: > Hi there > > I don't know all the history on this but I had my stapes bone " fixed. " > > Actually it ended up I didn't have one at all and they put in an > artificial > bone which did not result in better hearing. But that was in 1980 and > I'm > sure things are better now. Make sure they remember that the nerve in > his > face may not be where they expect it to be. > > Kay > ear surgery > > > > well we saw the ENT yesterday after testing Wesley's hearing > on > > bones and with masking he said we are good candidate for this > > surgery to fix his hearing. he said its a matter of fixing one > of > > the bones and they are not sure which one tell they get in there. > if > > its one of the first two in the ear its fairly easy the third > is > > more complicated and the kids have to be holding still pretty > much > > for three days. he said they only do one at a time incase > something > > happens they do the worst ear first Wesley's worst ear shows > > that he will go from about a 70 % loss in it to a 10% loss the > > > other ear could go to perfect hearing but if something > happened > > and we lost his good ear that would be really bad. so maybe > as > > early as some time in april we are having his worst ear > operated > > on. he is excited he keeps saying " I did good on my > tests > > No more hearing aids " > > the ENT also sounded positive about getting our insurance > to > > pay for the teeth and stuff that we are working on. he will be > > writing a letter and checking with some other specialists for > us. I > > wonder how much reminding its going to take to get all these > letters > > from Drs. I know they are not easy to get as the Drs. sound when > > > they say oh ya I will do that. > > Take care everyone > > KayRena who is wondering how many more things wes will pick > up > > from school when he doesn't miss part from loosing his hearing > aids > > so often . > > > > > > > > Membership of this email support groups does not constitute > membership in > the CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, you > may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Have they done a CT scan of the temporal lobe? On Dylan this showed which of the bones in his inner ear was the problem as well as multiple other issues. Kim > thank you for the word of advice I will remember to mention that to > the dr. > kayRena > > Kay Lynd wrote: > >> Hi there >> >> I don't know all the history on this but I had my stapes bone " fixed. " >> >> Actually it ended up I didn't have one at all and they put in an >> artificial >> bone which did not result in better hearing. But that was in 1980 and >> I'm >> sure things are better now. Make sure they remember that the nerve in >> his >> face may not be where they expect it to be. >> >> Kay >> ear surgery >> >> >>> well we saw the ENT yesterday after testing Wesley's hearing >> on >>> bones and with masking he said we are good candidate for this >>> surgery to fix his hearing. he said its a matter of fixing one >> of >>> the bones and they are not sure which one tell they get in there. >> if >>> its one of the first two in the ear its fairly easy the third >> is >>> more complicated and the kids have to be holding still pretty >> much >>> for three days. he said they only do one at a time incase >> something >>> happens they do the worst ear first Wesley's worst ear shows >>> that he will go from about a 70 % loss in it to a 10% loss the >> >>> other ear could go to perfect hearing but if something >> happened >>> and we lost his good ear that would be really bad. so maybe >> as >>> early as some time in april we are having his worst ear >> operated >>> on. he is excited he keeps saying " I did good on my >> tests >>> No more hearing aids " >>> the ENT also sounded positive about getting our insurance >> to >>> pay for the teeth and stuff that we are working on. he will be >>> writing a letter and checking with some other specialists for >> us. I >>> wonder how much reminding its going to take to get all these >> letters >>> from Drs. I know they are not easy to get as the Drs. sound when >> >>> they say oh ya I will do that. >>> Take care everyone >>> KayRena who is wondering how many more things wes will pick >> up >>> from school when he doesn't miss part from loosing his hearing >> aids >>> so often . >>> >>> >>> >>> Membership of this email support groups does not constitute >> membership in >> the CHARGE Syndrome Foundation. >>> For information about the CHARGE Syndrome >>> Foundation or to become a member (and get the newsletter) >>> please contact marion@... or visit >>> the CHARGE Syndrome Foundation web page >>> at http://www.chargesyndrome.org >>> 7th International >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> Information will be available at our website >>> www.chargesyndrome.org or by calling 1-. In Canada, you >> may >> contact CHARGE Syndrome Canada at 1- (families), visit >> www.chargesyndrome.ca, or email info@.... Thank you! >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 the DR said doing that will show some things but does not show the bones accurately so it could give an idea but wont necessarily tell them what exactly they will be facing . kayRena Kim Lauger wrote: > Have they done a CT scan of the temporal lobe? On Dylan this showed > which > of the bones in his inner ear was the problem as well as multiple > other > issues. Kim > > > > > > thank you for the word of advice I will remember to mention that > to > > the dr. > > kayRena > > > > Kay Lynd wrote: > > > >> Hi there > >> > >> I don't know all the history on this but I had my stapes bone > " fixed. " > >> > >> Actually it ended up I didn't have one at all and they put in an > >> artificial > >> bone which did not result in better hearing. But that was in 1980 > and > >> I'm > >> sure things are better now. Make sure they remember that the nerve > in > >> his > >> face may not be where they expect it to be. > >> > >> Kay > >> ear surgery > >> > >> > >>> well we saw the ENT yesterday after testing Wesley's hearing > >> on > >>> bones and with masking he said we are good candidate for > this > >>> surgery to fix his hearing. he said its a matter of fixing > one > >> of > >>> the bones and they are not sure which one tell they get in there. > > >> if > >>> its one of the first two in the ear its fairly easy the third > > >> is > >>> more complicated and the kids have to be holding still pretty > >> much > >>> for three days. he said they only do one at a time incase > >> something > >>> happens they do the worst ear first Wesley's worst ear > shows > >>> that he will go from about a 70 % loss in it to a 10% loss > the > >> > >>> other ear could go to perfect hearing but if something > >> happened > >>> and we lost his good ear that would be really bad. so maybe > >> as > >>> early as some time in april we are having his worst ear > >> operated > >>> on. he is excited he keeps saying " I did good on my > >> tests > >>> No more hearing aids " > >>> the ENT also sounded positive about getting our > insurance > >> to > >>> pay for the teeth and stuff that we are working on. he will > be > >>> writing a letter and checking with some other specialists for > >> us. I > >>> wonder how much reminding its going to take to get all these > >> letters > >>> from Drs. I know they are not easy to get as the Drs. sound > when > >> > >>> they say oh ya I will do that. > >>> Take care everyone > >>> KayRena who is wondering how many more things wes will pick > > >> up > >>> from school when he doesn't miss part from loosing his > hearing > >> aids > >>> so often . > >>> > >>> > >>> > >>> Membership of this email support groups does not constitute > >> membership in > >> the CHARGE Syndrome Foundation. > >>> For information about the CHARGE Syndrome > >>> Foundation or to become a member (and get the newsletter) > >>> please contact marion@... or visit > >>> the CHARGE Syndrome Foundation web page > >>> at http://www.chargesyndrome.org > >>> 7th International > >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, > 2005. > >> Information will be available at our website > >>> www.chargesyndrome.org or by calling 1-. In Canada, > you > >> may > >> contact CHARGE Syndrome Canada at 1- (families), visit > >> www.chargesyndrome.ca, or email info@.... Thank you! > > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 hi, I'm sure it's not the same thing, but, tim had a cyst wrapped around the bones in his ear (2) , so they had to remove them--and what little hearing he had in the process--after that being his " good " ear for 6 years. they tehn went in 6 months later and removed the 3rdd bone and put in a prosthesis...after almost a year, he finally had a little hearing back, and with aides has good hearing--when he wants to hear things that is!! good luck! maria ear surgery > > > > > > > well we saw the ENT yesterday after testing Wesley's hearing > > on > > > bones and with masking he said we are good candidate for this > > > surgery to fix his hearing. he said its a matter of fixing one > > of > > > the bones and they are not sure which one tell they get in there. > > if > > > its one of the first two in the ear its fairly easy the third > > is > > > more complicated and the kids have to be holding still pretty > > much > > > for three days. he said they only do one at a time incase > > something > > > happens they do the worst ear first Wesley's worst ear shows > > > that he will go from about a 70 % loss in it to a 10% loss the > > > > > other ear could go to perfect hearing but if something > > happened > > > and we lost his good ear that would be really bad. so maybe > > as > > > early as some time in april we are having his worst ear > > operated > > > on. he is excited he keeps saying " I did good on my > > tests > > > No more hearing aids " > > > the ENT also sounded positive about getting our insurance > > to > > > pay for the teeth and stuff that we are working on. he will be > > > writing a letter and checking with some other specialists for > > us. I > > > wonder how much reminding its going to take to get all these > > letters > > > from Drs. I know they are not easy to get as the Drs. sound when > > > > > they say oh ya I will do that. > > > Take care everyone > > > KayRena who is wondering how many more things wes will pick > > up > > > from school when he doesn't miss part from loosing his hearing > > aids > > > so often . > > > > > > > > > > > > Membership of this email support groups does not constitute > > membership in > > the CHARGE Syndrome Foundation. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > 7th International > > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > > Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. In Canada, you > > may > > contact CHARGE Syndrome Canada at 1- (families), visit > > www.chargesyndrome.ca, or email info@.... Thank you! > > > > > > Quote Link to comment Share on other sites More sharing options...
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