Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Hi , My son also had alot of ear infections as an infant and finally got a tube put in Dec./02. About 7 months later, after a couple more infections, the ENT specialists decided to put another one in and that was when he found the C'toma. The ENT specialist then referred my son to an Otologist who performed the surgery on Wednesday. If your son does have a C'tom it would be a good idea to see a pediatric Otologist if possible because they specialize only in children's ears. Keep us posted on your son and take care. - Dee > Hi there! > > My name is and my three year old son " may " have a cholesteatoma. > He has suffered from ear infection since he was born. He first had > tubes at 11mos. He seemed to do okay when the tubes were in, but then > when they fell out last January we fell into the ear infection routine > again. But this time he was constantly leaking fluid out of his ears. > Even when he didn't have an infection sometimes he would just leak fluid > out of his ears. > > Finally after 9 diagnosed ear infections (and some I didn't even take > him in for.... antibiotics never seemed to help him) and noticible > hearing loss I took him back the doctor. I was worried that after all > the infections he had some permanent damage. The doctor looked and said > they couldn't test the hearing til the fluid was gone.... so 10 days > later I went back. The fluid was still there but at least no infection. > So I asked the doctor if he should go back to the ENT. She agreed. I > didn't want to go back to my first ENT because I didn't have a good > feeling about him.... disorganized office and staff, not real friendly, > and NO follow up appointments. (Possibly they dropped me because I lost > regular insurance, and ended up with Medicaid for my kids) So the first > appointment with a different ENT wasn't til mid March. > > Well, my father died on January 27th. And I had to go back to the > Detroit/ Ann Arbor area for the funeral. My dad was always a little > wary of the medical care in my community (though I used to defend it), > so I decided to see if I could get him to and ENT while we were down for > the funeral.... it sounds crass, but it is what my dad would have > insisted on....lol! He was seen by a doctor at St. ph's Hospital in > Ypsilanti. The doctor looked in his ear and saw that he had a large > white mass in one ear. He said it could be scar tissue or it could be > cholesteatoma. He then sent us across the hall for a hearing test, > where Shane (my three year old) flat lined his tympanigram. He also > tested as having some significant hearing loss witht he audiogram. > > Because Shane also tends to get sick alot.... pneumonia a few times, > brochial infections, and has had toxic synovitis.... the doctor decided > to remove the adnoids as well as do new tubes. He said he would do a > full blood work up as well and check the mass while he was in surgery. > He wanted to do the surgery right away, but the soonest that I could get > back to the area is next weekend. So he is scheduled for a week from > today. > > I am very worried. I feel that finally I have a doctor that can give me > the answers to why my son has always been so sick. But I am also mad at > the ENT from my area. Shouldn't he have noticed something when the > tubes went in the first time? If it is cholesteatoma? > > Have many of you or your kids had tubes and not had a diagnoses at that > time? > > Thanks! > > > > > Videki <http://www.bead-goddess.com/> Designs > > > <http://cgi6.ebay.com/ws/eBayISAPI.dll? ViewSellersOtherItems & userid=lvde > signs & completed=0 & sort=3 & since=-1> my ebay auctions > > my all new <http://leslievideki.typepad.com/weblog/> online journal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Hi ! I just wanted to say " hello " . ( and I know one another from a glass artist's internet forum.) Shane is in my prayers of course, and I will be thinking of him on his surgery date next week. C-toma board: Hey! I haven't posted here in *ages*. Zach is five now, soon to be six. It has been over a year since his second surgery and so far no recurrance, knock on wood! (He has mild hearing loss in the c-toma ear still.) Well I will probably make a Zach post soon, as there are some other things going on with him that I am really curious to hear whether other children are similar. , Hi! Sorry that you have to be here, but really glad there is a place like this on the internet for you and others. It's rather shocking when you are new to it all, at least it was to me. And then, it is such a rare thing, there are so few of us! (patients and parents of the little ones.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 I would really like to thank those of you who did respond! Thank you!! I had to be gone overnight last night for a show that I was doing (I am a bead maker), and when I got home I learned that Shane threw up shortly before I got home. I am so sick of him being sick!! He was complaining that his ears were hurting in the morning.... I hope this is totally unrelated to his ears. For now I will just watch, hope and pray! Thanks everyone! Videki Designs my ebay auctions my all new online journal Quote Link to comment Share on other sites More sharing options...
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