Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Greetings, This is day 2 for me on this list, I learned about this list at the Carbone workshop in Cincinnati Ohio last weekend. I have been in contact with a few people from Dayton Ohio who are tyring to gather up a group of parents for Dr.Cabone/McGreevy workshop #2. Is there anyone on this list that is making the same efforts. I am from Cape Girardeau Mo, and would be very interested to converse with families in Missouri regarding implementing Carbone. Thanks in Advance! Elijah's MOM () michelle@... http://wingo.org ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 your story sounds VERY familiar to me. It is almost exactly what happened with my son MIles. His ped saw something odd at his 5 year check up, thought it may be an ear infection even though he had never had one before, treated with antibiotics, nothing changed, went in for ear tubes to let it drain and the doc came out without even putting a tube in as there was no fluid, just a huge tumor. Ya, not what a parent wants to find out. Miles had C-toma removal surgery in January of '06, the surgery was extensive, lasted 6 hours, but he was home the same day, and ready to go back to school 4 days later, (we kept him home through the weekend so he missed a full week of school). We found all of his hearing bones had been eaten by the tumor. He had a second look surgery in August of 06. At this time the doctor also put in a prostetic. 3 hour surgery, no sign of the tumor (miles was congenital so no ear anatomy deformaty) but the hearing is not improved in that ear at all. He is in the process of getting a hearing aid for his affected ear. if you have ANY questions, don't hesitate to write. I'll answer what I can for you. Joycelyn On 1/17/07, rakuente <manturuk@...> wrote: Hi everyone! I'm new here, and as you can tell from the subject lineI am the parent of a child with a ctoma. Our story is that mydaughter Beth (age 6) went in to surgery last week to have a tube putin her left ear. The surgeon had told me before the surgery that there was a small chance she may have a very minor build-up on skinbehind the eardrum, but he couldn't see anything due to the fluid inher ear. He said he'd schedule her surgery for 30 minutes instead of the usual 15 to give him a chance to clean out anything that might bethere.So she gets her tube put in and when the doc comes out to do the usual " everything went fine... " but, I didn't get that speech! Instead he said that it turned out she had a significat cholesteatoma in her earand it would require a more extensive proceedure to remove it.We were told to let the ear drain for 3 weeks now that the tube is inand then come back for an office visit to discuss the surgery to remove the ctoma. I only got to speak to the surgeon for about 3minutes as he was explaining this as Beth was waking up from surgeryand she was crying and he had another surgery scheduled. So right now I know absolutly nothing other than the fact that Beth has a ctoma in one ear and will have another surgery next month. Bethfirst had tubes in when she was 18 months old, and she started havingbloody drainage from her ear when she was 3. It stopped after a few months and she has been totally asymptomatic ever since. She wasfinally sent to a specialist this year when she failed her schoolhearing test for the second year in a row. Other than not hearing outof one ear, she still has no symptoms of anything being wrong: no dischange, pain, pressure, or anything. Just can't hear anything! Looking back, I am kicking myself for not being pushy. But I reallynever doubted that the doctors were right that she just neededantibiotics and she'd grow out of getting ear infections. Don't all kids get ear infections? As for the failed hearing tests, maybe shejust had a head cold that day? I had no idea this sort of thing evenexisted!I'm learning all I can before we go back to the doc in 3 weeks, so please send along anything that you think someone newly diagnosedshould know! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 Yes, this is also familiar to me. My son also had " fluid " and resultant reduced hearing (or so we thought). In his case, the ctoma was so big it was presenting very evenly behind the ear drum with no retraction pockets because it was congenital with no middle ear/eustachian tube malformations. In fact, my son had no symptoms and hardly had any ear infections at all through his young years... until the ctoma got big enough that it really started causing a blockage. By then the docs could see the " fluid. " So, for us, it was if he had no ear problems and they all of a sudden had a long unending ear problem. We did antibiotics for almost 6 months with no affect before the pediatrician suggested ear tubes. Then I asked him directly, " Could there be any harm in waiting on the tubes, while we try some natural methods, such as diet, herbs, supplements, etc... to clear the ear? " And he told me NO, no harm, we could try that if we wanted to. So then we went another 6 months trying all kinds of alternative methods to clear the " fluid " from the ear before deciding to go ahead with the ear tube surgery. My son's ctoma was also diagnosed when they found they could not insert a tube because the " fluid " was solid. AND, I couldn't hear what the doc said because he gave us about 3 minutes as Curtis was coming out of anesthesia, screaming and thrashing around. I did just what you have done... ran to the internet and starting learning all I could. Naturally, I wonder if my son would still have his hammer, anvil, and stirrup IF he had been diagnosed correctly right away. But I have to say the pediatrician in question handled himself very well after that. He apologized profusely to us, clearly feeling that he had let us down (well, he did make a big mistake there), explained that in 14 years of practice he had never seen this condition before. He then became our biggest advocate within our insurance system, getting us approval to go outside the system, ordering any tests that we wanted, letting us call him directly with any questions we had, advising us about choosing surgeons,... he really helped us a lot through some difficult stuff. Don't feel bad that you didn't spot it sooner. It's an unusual problem that often doesn't show symptoms and, in my son's case, his hearing would come and go because the ctoma itself, if big enough, can conduct sound and then it seems like the child's hearing has come back! Just try to learn as much as you can now that you know. Marie > > > > Hi everyone! I'm new here, and as you can tell from the subject line > > I am the parent of a child with a ctoma. Our story is that my > > daughter Beth (age 6) went in to surgery last week to have a tube put > > in her left ear. The surgeon had told me before the surgery that > > there was a small chance she may have a very minor build-up on skin > > behind the eardrum, but he couldn't see anything due to the fluid in > > her ear. He said he'd schedule her surgery for 30 minutes instead of > > the usual 15 to give him a chance to clean out anything that might be > > there. > > > > So she gets her tube put in and when the doc comes out to do the usual > > " everything went fine... " but, I didn't get that speech! Instead he > > said that it turned out she had a significat cholesteatoma in her ear > > and it would require a more extensive proceedure to remove it. > > > > We were told to let the ear drain for 3 weeks now that the tube is in > > and then come back for an office visit to discuss the surgery to > > remove the ctoma. I only got to speak to the surgeon for about 3 > > minutes as he was explaining this as Beth was waking up from surgery > > and she was crying and he had another surgery scheduled. > > > > So right now I know absolutly nothing other than the fact that Beth > > has a ctoma in one ear and will have another surgery next month. Beth > > first had tubes in when she was 18 months old, and she started having > > bloody drainage from her ear when she was 3. It stopped after a few > > months and she has been totally asymptomatic ever since. She was > > finally sent to a specialist this year when she failed her school > > hearing test for the second year in a row. Other than not hearing out > > of one ear, she still has no symptoms of anything being wrong: no > > dischange, pain, pressure, or anything. Just can't hear anything! > > > > Looking back, I am kicking myself for not being pushy. But I really > > never doubted that the doctors were right that she just needed > > antibiotics and she'd grow out of getting ear infections. Don't all > > kids get ear infections? As for the failed hearing tests, maybe she > > just had a head cold that day? I had no idea this sort of thing even > > existed! > > > > I'm learning all I can before we go back to the doc in 3 weeks, so > > please send along anything that you think someone newly diagnosed > > should know! > > > > > > > Quote Link to comment Share on other sites More sharing options...
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