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Author Topic: My 3 year old, having her 4th ear operation!  (Read 1185 times)
Posts: 1

« on: May 17, 2012, 03:14:19 PM »

My 3 year old is going to have her 4th surgery next month...  When she was 10 months old, a huge lump appeared on her neck, out of no where which also pussed often.  After being hospitalized for a few days for a "spiderbite" a few weeks after, I got a referral to an ENT for her frequent ear infections.  A week later at the appointment, the ENT agreed she needed tubes placed in her ear, but was more concerned with her neck.  He had us come in the next day because he was sure it wasn't a "spiderbite" and said he'd also place tubes the same day.  So, an hour after the procedure, the Dr. comes in and sits down, which we all know can never be good, as they are normally in a hurry! Smiley  He told us that her neck was actually a brachial cleft cyst, and that he was not able to place a tube in the left ear as he found a cholesteatoma.  We live in a small town in Nebraska, so he referred us immediately to Denver, Co at the Children's Hospital.  A week later, she was having surgery on her neck, a couple months later her first 8 hour surgery to remove the Congential C-toma.  After knowing what I do now, I was just as surprised to hear it was Congential, not acquired from all of her other ear problems.  Seven months after removing the C-toma, on her 1st birthday she went in again for another surgery, which we thought was to fix the bones.  However, the C-toma was back, so another 8 hour surgery. Sad  Then, about 8 months later we finally got good news that the C-Toma was gone, and repairs were made, including prosthetic bones to repair the damages.  She has had many hearing tests done, all of which showed mild hearing loss until the hearing test after her last surgery in July 2011.  It showed a big change in her hearing and the Dr. told us that she would need another surgery.  He said that either the C-Toma had returned, or that the bones/repairs were not working..either way, he'd have to operate to repair the hearing.  He also said that because none of her symptoms seemed to be too dramatic, that we would wait as long as we could, letting her finish her first year of preschool. 

Last week, I traveled to Denver for her pre-surgery visit.  At this visit, the Dr. removed a larger than pea sized, dark brown, almost black ball of wax from the left year.  He didn't even do the hearing test to see if there were any improvements from July 2011, just said surgery was a must.  This left me extremely discouraged.  My husband tells me not to, but I always tend to think the worse.  And for whatever reason when she was first diagnosed, I did not do nearly as much research as I have been doing in the last week.  I am terrified.  I had never heard or been told anyothing about if left untreated, it could create an infection in the brain, or about the low re-occurance rates-yet we can't seem to cut it!  My only concern was her hearing and facial paralysis, which she already has partially because of her neck operation.  I keep reading stories and it only worries me more, but I also feel like it helps me also understand things more. Altogether, this will be her 6th operation and she is only 3.  This will be her 4th operation on the ear.  I have read that the reoccurance rate is greater in many of you have experience with children/c-toma/and it reoccuring???

If there is one thing though, that I have gained from this experience, and frequent visits to the Children's Hospital, is that we still are truly blessed, and thousands of children have it so much worse than her.  I still hate seeing her go through the pain, and now that she can speak, I am worried the questions won't end, and it will crush me!

Thanks for reading our story... Smiley   
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