Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 My daughter, Masie, has always had a lot of ear wax... even as a baby, but our doctor doesn't seem to think hers was a congenital thing. That hers was caused by the (I know I am going to get flamed for this) traditional way of an unresolved ear infection in the past one possibly 2 years that caused a small hole in her ear drum and well... you all know the story from there... same for everyone. It's very weird though, because her history presents itself as a severe ear infection, that I could actually SEE the ctoma at first and our ped. didn't know what it was and we tried multiple times to clean her ear out of the " infection " , etc... to no avail. We were sent to an ENT from there and he informed us that wheat we were seeing was the ctoma and then we went to the specialist. And here we are. As a small child (she's 6) she has had ear infections on and off, nothing that I would consider to major... like my youngest who ended up with tubes at 11 months because hers were chronic. So, that's just my take on the situation. Pamela Waling " smile, it confuses people... " > From: bethsdragon <bethsdragon@...> > Subject: congenital c-tomas > cholesteatoma > Date: Thursday, January 8, 2009, 10:53 AM > I'd like to hear from everyone who has a child whos > c-toma is > congenital (or anyone now grown that had one as a kid). > > I was reading stories and noticed alot of people stating > that thier > child had a lot of earwax. My son always had to have his > ears cleared > when we went for dr visits. Not flushed just scraped out. > (never > impacted that I know if) > > So now I am wondering....can we consider this a symptom? If > nothing > else it seems to be a common thing. Lets see how many had > this before > they were diagnosed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 About the tubes ... well, I'm not sure. This is the thing I hate about my otologist. He never even told me he had put a tube in!!!!!! He's great at what he does. He's just always over booked and too busy and uninformative. Anyways, me ENT did say that the tube might fall out on it's own so, I don't know what kind of tube that means it is..lol. I've started back on the Cipro and go back to the ENT next week and I guess I'll just have to take things one visit at time. Thanks for your opinion . I really enjoy reading on here people's experiences. It's given me way more info than I can get out of my doctor. Jo, That sounds like a reasonable prediction. We have had Chloe's tubes get blocked before, but the cipro or Floxin drops always do the trick for her. Do you have regular tubes or T-tubes? Maybe that makes a difference. On Thu, Jan 8, 2009 at 9:20 PM, Jo Watters <tink442002 (DOT) com> wrote: Well, I am 38 and was just diagnosed last in October of 2007 with a c-toma in my left ear. When we did a ct scan we found that I also had one in my right ear. Anyways, the one in my right ear the dr said was congenital. There was actually some embrionic (sp) fluid in it. I never had any pain or excessive ear wax. In fact the dr had no idea there was anything wrong with that ear except for the hearing loss. I had allergies and sinus problems from the time I was 5 or 6. My mom took me to specialiest and nobody ever caught the c-toma. So, anyways, I had the one in my left ear removed first since it was pressing on my facial nerve causing paralysis. 6 months later I had the one removed from my right ear. They had to remove everything out of it because it was already inbetween the ear and the brain. Three months ago I had reconstruction surgery and a tube put in my left ear with a canal wall down procedure. The problem I'm having now is that my tube will not stay unstopped. I was at my otologist right before Christmas and he spent 30 minutes trying to unstop it. Idk if he ever got it unstopped or not but he told me to quit doing the ear drops and come back in 3 months. Then today I see my ENT and he says it's stopped up really bad. So, now I'm back on the drops again to try and loosen up all the dead skin and drainage that is blocking and have to get allergy tested too. Basically, my ENT said that if we can't get the tube to drain and get my allergies and sinuses under control then the c-toma is going to come back. Is this what everyone else thinks too?? Just curious!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Jo, I am 42 and January 2008 I had Bell's Palsy it wasn't until 6 months later it was discovered that I had a c-toma in my right ear. The physical appearance of my face recovered 100%, however, I still get twitching and strange sensations on the right side of my face which makes me wonder if the paralysis may return. Do you ever feel that way? I also suffer from disequalibrium on a daily basis (some days are better than others) which the doctor doesn't know why because the balance canal was okay (no c-toma). I am going to go to the allergist to get tested - I feel in my case that it is better to avoid anything that goes to the ear and I do have slight nasal/throat drainage always (which I have always felt wasn't a big deal). When I was a child the doctor did not put tubes in my ear he lanced my ears every week for a long period of time - as an adult I have not had any major ear infections I was aware of and have never had a problem with excessive ear wax. All I know is my body formed one c-toma it could form another so I will have regular doctors appointment without fail. From: Jo Watters <tink442002@...>cholesteatoma Sent: Thursday, January 8, 2009 8:20:06 PMSubject: congenital c-tomas Well, I am 38 and was just diagnosed last in October of 2007 with a c-toma in my left ear. When we did a ct scan we found that I also had one in my right ear. Anyways, the one in my right ear the dr said was congenital. There was actually some embrionic (sp) fluid in it. I never had any pain or excessive ear wax. In fact the dr had no idea there was anything wrong with that ear except for the hearing loss. I had allergies and sinus problems from the time I was 5 or 6. My mom took me to specialiest and nobody ever caught the c-toma. So, anyways, I had the one in my left ear removed first since it was pressing on my facial nerve causing paralysis. 6 months later I had the one removed from my right ear. They had to remove everything out of it because it was already inbetween the ear and the brain. Three months ago I had reconstruction surgery and a tube put in my left ear with a canal wall down procedure. The problem I'm having now is that my tube will not stay unstopped. I was at my otologist right before Christmas and he spent 30 minutes trying to unstop it. Idk if he ever got it unstopped or not but he told me to quit doing the ear drops and come back in 3 months. Then today I see my ENT and he says it's stopped up really bad. So, now I'm back on the drops again to try and loosen up all the dead skin and drainage that is blocking and have to get allergy tested too. Basically, my ENT said that if we can't get the tube to drain and get my allergies and sinuses under control then the c-toma is going to come back. Is this what everyone else thinks too?? Just curious!! Quote Link to comment Share on other sites More sharing options...
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