Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Hi I'm Tina, My daughter(9)and I are at the beginning of this nightmare - we were told that she has a Cholesteatoma in her left ear and that surgery is planned for 19th Jan 09. Can anyone help me find my way around - what questions should I be asking the Dr - she is going for a CT scan in the next week or so? She has had no pain etc - and is not accepting too well the idea of surgery Those people with children how do you tell them about what is happening/going to happen and how much do I tell her about possibilities of side affects and hearing loss etc? What happens if the bones in the ear are affected ? What happens then? I have so many questions I'm not sure where to start - and also I am having loads of nightmares and crying loads - Is there anything I could have done to prevent this having to happen - I have taken her to the Drs loads and always given her the antibiotics? Tina x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Tina, My 12 year old daughter, Maggie, is scheduled for surgery 12/12/08. And yes I am scared. We’ve been positive about it around her. We told her about the behind the ear incision, possibility of titanium parts (which she thought was cool), and missing school. But we have not told her any bad outcomes – because she could have an excellent recovery and this one surgery is it (except for the forever re-checks). I’ve been reading the message boards for a while and it IS scary to read all these stories. My heart goes out for those who are struggling with c-toma. I’m hoping for the best for her. My husband and I met with her pediatrician to discuss the questions to ask the surgeon. He was the one to diagnose her, and interestingly enough, he had never had a patient with a c-toma. Perhaps, Maggie and your daughter could exchange e-mails and discuss about their experience. You can contact me by e-mail. Good luck! BTW, her doctor did not recommend a CT scan; so she didn’t get one. Frances Dalrymple Huntsville, AL New Kid on The Block Hi I'm Tina, My daughter(9)and I are at the beginning of this nightmare - we were told that she has a Cholesteatoma in her left ear and that surgery is planned for 19th Jan 09. Can anyone help me find my way around - what questions should I be asking the Dr - she is going for a CT scan in the next week or so? She has had no pain etc - and is not accepting too well the idea of surgery Those people with children how do you tell them about what is happening/going to happen and how much do I tell her about possibilities of side affects and hearing loss etc? What happens if the bones in the ear are affected ? What happens then? I have so many questions I'm not sure where to start - and also I am having loads of nightmares and crying loads - Is there anything I could have done to prevent this having to happen - I have taken her to the Drs loads and always given her the antibiotics? Tina x No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.175 / Virus Database: 270.9.9/1808 - Release Date: 11/23/2008 6:59 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Hi Tina, We are 6 weeks into the nightmare. I know just what you are going through. I have never been part of one of these groups and therefore I am not sure if the reply I posted earlier worked. Our baby Marc (who is three) was diagnosed October third with bilateral cholesteatoma. We are both doctors and this completely blindsided us as well as our pediatricians. Marc had tubes, then the CT, then the first surgery October 8th. The second ear was done on October 31. I know I am not as much of an expert as some who have been through much more, but I am happy to report that amid even some very complicated complications with temporary facial nerve paralysis, our little guy is doing just fine. We haven't allowed him to be exposed to any school aged kids in order to keep him healthy. Other than that he is back to normal. Better days are coming! If I can answer ANY questions, please e-mail me. I keep wanting to help as well as get help myself, and I have to say, similar stories are very supportive. Take care, LoriOne site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 Tina, I have been looking at these messages looking for answers too. My husband and I are both doctors and our three year old had BILATERAL cholesteatomas that were enormous.(The size of large tomatoes according to the doctors.) He has had three surgeries in the past six weeks and has had two awesome outcomes. I did what you did....cried for weeks and did not eat much. A small bit of advice-- take good care of yourself, bexcause your daughter will be needing you. My Marc had a few unusual circumstances with a facial nerve paresis that required another hospitalization, but even that is doing 90% better. Better days are coming! > > Tina, > > Do not beat yourself up it is not your fault that your daughter has a cholesteatoma. It's just unfortunate that some bodies were built to harbor cholesteatomas - I am one of them and so is your daughter along with many other people. Does your daughter having hearing problems now? I could hear perfectly normal until I had my cholesteatoma surgery and can now hear very little to nothing with my right ear - it is weird at first but I am adjusting easier and quicker than I expected and for a child they bounce back quicker than adults. All will go well - make sure you have the best otologist doctor you can find in your area and your results will be better than expected. It is something that has to be taken care of but will not be the end of the world. When I first found out I had a cholesteatoma I lived in panick attack mode for 3 months until I had surgery. I will be thinking of you as you go through the whole process. > > > > > > > ________________________________ > From: crossleytina <crossleytina@...> > cholesteatoma > Sent: Monday, November 24, 2008 8:26:26 AM > Subject: New Kid on The Block > > > Hi I'm Tina, > > My daughter(9)and I are at the beginning of this nightmare - we were > told that she has a Cholesteatoma in her left ear and that surgery is > planned for 19th Jan 09. Can anyone help me find my way around - what > questions should I be asking the Dr - she is going for a CT scan in > the next week or so? > > She has had no pain etc - and is not accepting too well the idea of > surgery > Those people with children how do you tell them about what is > happening/going to happen and how much do I tell her about > possibilities of side affects and hearing loss etc? > > What happens if the bones in the ear are affected ? What happens then? > > I have so many questions I'm not sure where to start - and also I am > having loads of nightmares and crying loads - Is there anything I > could have done to prevent this having to happen - I have taken her to > the Drs loads and always given her the antibiotics? > > Tina x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 I'm sorry. My 7 year old just had his third surgery. The first two were " canal wall ups. " After the second one, he did an extensive reconstruction, and my son's hearing came up quite a bit. Unfortunately, several little " pearls " , as he called them, returned, and pushed out the work he had done. He did all the reconstruction again, this time around. So this time he did " canal wall down. " It is more extensive, but also has a better chance to eradicate the " disease " , as he calls it. The only thing that bothers me right now is how much this is still bleeding. Fortunately we have our two week check today. Anyway, it's just like any other hard thing in life. You cry, and you get through it. > > Hi I'm Tina, > > My daughter(9)and I are at the beginning of this nightmare - we were > told that she has a Cholesteatoma in her left ear and that surgery is > planned for 19th Jan 09. Can anyone help me find my way around - what > questions should I be asking the Dr - she is going for a CT scan in > the next week or so? > > She has had no pain etc - and is not accepting too well the idea of > surgery > Those people with children how do you tell them about what is > happening/going to happen and how much do I tell her about > possibilities of side affects and hearing loss etc? > > What happens if the bones in the ear are affected ? What happens then? > > I have so many questions I'm not sure where to start - and also I am > having loads of nightmares and crying loads - Is there anything I > could have done to prevent this having to happen - I have taken her to > the Drs loads and always given her the antibiotics? > > Tina x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 Tina, I may be late in the game to be writing this, but my daughter is 6 and she had her surgery on October 27th. We went for her checkup on the 18th of November and the doctor said all is well. Everything looks great. Our story began in early August when Masie was diagnosed with what we thought was a massive ear infection. Through about 5 rounds of antibiotics and nothing working we finally went to the ENT and he diagnosed her with cholesteatoma. I freaked... internally. All Masie knew was that she had a tumor in her ear and the only way to get it out was to have surgery. At first she was scared, but our doctor, who is awesome by the way, explained everything to both of us and she got to see pictures of her ear on the inside, her PE tube that they placed in her left ear in early October and she even got to see the ctoma. Hers reached into the middle ear along with the mastoid region. Very big according to the doctor. She had 85% hearing loss in her right ear and I didn't even know it... tell me about feeling horrible. But we got through it, Masie adjusted incredibly well and she has an awesome teacher who has accommodated her hearing loss very well. She also lost 2 of her 3 hearing bones, therefore she can't technically hear in her right ear, but I think she has some form of hearing, just don't know how much. She will go and have her titanium prosthetics put in around February or April... All I can say is, as a parent, you did nothing wrong. Like said, some people just " get them " . They don't know why. Don't blame yourself. Just get the information and pick and choose (as a parent) what you want to tell your daughter. Good luck and keep us informed. Pam Pamela Waling " smile, it confuses people... " > From: crossleytina <crossleytina@...> > Subject: New Kid on The Block > cholesteatoma > Date: Monday, November 24, 2008, 8:26 AM > Hi I'm Tina, > > My daughter(9)and I are at the beginning of this nightmare > - we were > told that she has a Cholesteatoma in her left ear and that > surgery is > planned for 19th Jan 09. Can anyone help me find my way > around - what > questions should I be asking the Dr - she is going for a CT > scan in > the next week or so? > > She has had no pain etc - and is not accepting too well the > idea of > surgery > Those people with children how do you tell them about what > is > happening/going to happen and how much do I tell her about > possibilities of side affects and hearing loss etc? > > What happens if the bones in the ear are affected ? What > happens then? > > I have so many questions I'm not sure where to start - > and also I am > having loads of nightmares and crying loads - Is there > anything I > could have done to prevent this having to happen - I have > taken her to > the Drs loads and always given her the antibiotics? > > Tina x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 Bones gets necrosed/eroded by C-Toma, many times these are removed, some time removed and reshaped to make conduction mechanism Arun On 11/24/08, crossleytina <crossleytina@...> wrote: Hi I'm Tina,My daughter(9)and I are at the beginning of this nightmare - we weretold that she has a Cholesteatoma in her left ear and that surgery isplanned for 19th Jan 09. Can anyone help me find my way around - what questions should I be asking the Dr - she is going for a CT scan inthe next week or so?She has had no pain etc - and is not accepting too well the idea ofsurgeryThose people with children how do you tell them about what is happening/going to happen and how much do I tell her aboutpossibilities of side affects and hearing loss etc?What happens if the bones in the ear are affected ? What happens then?I have so many questions I'm not sure where to start - and also I am having loads of nightmares and crying loads - Is there anything Icould have done to prevent this having to happen - I have taken her tothe Drs loads and always given her the antibiotics?Tina x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Tina, I can relate to the nightmares and crying over this, but there isn't anything you did or didn't do to make this happen to your daughter. Try not to beat yourself up too much, or hold on to guilt because you didn't do anything wrong. I have done all of that to myself, too, and it is really hard to not blame yourself. Just be glad that it is now found and can be taken care of and that you fould the right doctor to help you. Depending on if the cholesteatoma has eroded some of her hearing bones, her hearing may be reduced after this surgery- until a recontruction can be done later to insert prothetic replacement bones. You may want to tell her of this possibility in advance. I hope all goes well in January for your daughter. It is scary, especially for the first surgery. It is amazing how well the kids do- despite all of your worring! Take care. > > Hi I'm Tina, > > My daughter(9)and I are at the beginning of this nightmare - we were > told that she has a Cholesteatoma in her left ear and that surgery is > planned for 19th Jan 09. Can anyone help me find my way around - what > questions should I be asking the Dr - she is going for a CT scan in > the next week or so? > > She has had no pain etc - and is not accepting too well the idea of > surgery > Those people with children how do you tell them about what is > happening/going to happen and how much do I tell her about > possibilities of side affects and hearing loss etc? > > What happens if the bones in the ear are affected ? What happens then? > > I have so many questions I'm not sure where to start - and also I am > having loads of nightmares and crying loads - Is there anything I > could have done to prevent this having to happen - I have taken her to > the Drs loads and always given her the antibiotics? > > Tina x > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.