Guest guest Posted March 10, 2011 Report Share Posted March 10, 2011 HI Everyone I have not posted in nearly two years when my son was 4years old and we had just found he had a cholesteatoma. He had surgery and the ENT removed all the cholesteatoma and was able to save all his hearing bones as he spent time scrapping it off them. He then had surgery nearly a year later after he burst his eardrum, he had all the packing removed at this time and the ear was clear of cholesteatoma. All was clear and the ENT was extremely happy. Now my question is this- the ENT said because it was a congential Cholesteatoma and after nearly 12 months there was no sign of it growing back that it will never grow back. He said once they are gone they are gone, but this is only if it is congenital. I want to know if this is actually correct. I know I will never stop worrying about his ears and his hearing but would like to know if I really should be watching a little more carefully or are we pretty safe now. We had a really rough start to school with the effect on his hearing being extremely obvious and have battled thru speech therapy etc and he seems to be catching up to all the other kids. Just want to make sure I catch things before they get bad in the future. Thanks for reading Cheers Sydney Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2011 Report Share Posted March 11, 2011 , My daughter's was congenital and it grew back 2 1/2 years after her first surgery. It seems like a good thing to keep your eye on. We had 6 month checkups for many years. Her last surgery was cwd and we are now on yearly visits. > > HI Everyone > > I have not posted in nearly two years when my son was 4years old and we had just found he had a cholesteatoma. > > He had surgery and the ENT removed all the cholesteatoma and was able to save all his hearing bones as he spent time scrapping it off them. > He then had surgery nearly a year later after he burst his eardrum, he had all the packing removed at this time and the ear was clear of cholesteatoma. All was clear and the ENT was extremely happy. > > Now my question is this- the ENT said because it was a congential Cholesteatoma and after nearly 12 months there was no sign of it growing back that it will never grow back. He said once they are gone they are gone, but this is only if it is congenital. > I want to know if this is actually correct. > I know I will never stop worrying about his ears and his hearing but would like to know if I really should be watching a little more carefully or are we pretty safe now. > > We had a really rough start to school with the effect on his hearing being extremely obvious and have battled thru speech therapy etc and he seems to be catching up to all the other kids. Just want to make sure I catch things before they get bad in the future. > > Thanks for reading > > Cheers > Sydney Australia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2011 Report Share Posted March 13, 2011 Hi , My sons surgery was 2.5 years ago now and we are still seeing the ENT every six months. We are also going to Australian Hearing every six months for hearing tests just to make sure that his hearing is not deteriorating further. He hasn't had a regrowth, so all is good at present. Can I ask what hearing loss your son has? Does he have an aid? Or an FM for school? We are also in Sydney. > > HI Everyone > > I have not posted in nearly two years when my son was 4years old and we had just found he had a cholesteatoma. > > He had surgery and the ENT removed all the cholesteatoma and was able to save all his hearing bones as he spent time scrapping it off them. > He then had surgery nearly a year later after he burst his eardrum, he had all the packing removed at this time and the ear was clear of cholesteatoma. All was clear and the ENT was extremely happy. > > Now my question is this- the ENT said because it was a congential Cholesteatoma and after nearly 12 months there was no sign of it growing back that it will never grow back. He said once they are gone they are gone, but this is only if it is congenital. > I want to know if this is actually correct. > I know I will never stop worrying about his ears and his hearing but would like to know if I really should be watching a little more carefully or are we pretty safe now. > > We had a really rough start to school with the effect on his hearing being extremely obvious and have battled thru speech therapy etc and he seems to be catching up to all the other kids. Just want to make sure I catch things before they get bad in the future. > > Thanks for reading > > Cheers > Sydney Australia > Quote Link to comment Share on other sites More sharing options...
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