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Author Topic: just diagnosed  (Read 11282 times)
J
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Posts: 7


« on: April 22, 2012, 08:50:17 PM »

Hi all!

I've just been diagnosed with cholesteatoma. I'm 30, in Australia (female non-private patient, Wollongong) and have had a retracted ear drum for all of my life, multiple ear infections and so on. Like a text book person for developing primary cholesteatoma it seems. Always had bad hearing on both of my ears as a result of my ear history, bad but not terrible or need for any aid.

After pregnancy almost four years ago I had a "shushing" sound in my right ear, like the ocean. It wasn't painful, just very annoying! I told the GP at the post check up after labour who sent me to the ENT specialist. They said it was probably because of hormones from pregnancy, but the ENT doctor was a little suspicious at how retracted my ear drums were and wanted to send me for a CT and MRI scan to get a better view.

At the same time I had an abnormal pap smear and had to go straight into surgery for that. By the time that was all sorted the annoying sound in my ears were gone and I figured it was the pregnancy hormones so I never went for the CT and MRI scans as I figured I had plenty on my plate with a newborn and other medical issues.

Now, 3.5 years later and about a month and a half ago, I first started getting slight ear pain in my right ear. Nothing bad, and only at night time when going to bed. Didn't even require any pain killers and didn't keep me up at night at all. The pain even stopped after about a week without me even noticing. However, about a week after that I started getting a lot of wax and discharge coming out of my right ear (only in the mornings) which is very uncommon for me, I usually have no wax. I figured it was probably a perforated ear drum or perhaps maybe a ear infection. After about a week (2 weeks from now) the discharge/wax was also blood stained. This was only for a few days but as the slight pain started coming back I figured I better have it looked at.

Saw the GP last Monday who suspected a cholesteatoma. He sent me straight to the ENT doc who I saw on Thursday. Was sent for a CT on Friday and back to specialist on Tuesday (tomorrow) for the result.

Lots of questions right now, mostly of how much damage has been caused already. Is it close to my brain, nerves, how much bone destruction has it caused and so on. Does anyone know how quick these are growing?? I am wondering if I am a walking bomb - can I wake up tomorrow with a brain infection??

Well, I am hoping to find out tomorrow. Either way it has been good to read all the stories posted here, and I will share my journey for others to read.

Cheers,

J
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Zachary Craig
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Posts: 2


« Reply #1 on: April 25, 2012, 02:30:36 AM »

Hey J,
     I'm not sure I can answer your "walking bomb" or "how fast does it grow" questions, but I can tell you that as someone who has been lucky enough to be rid of it for over 20 years - I'm 26 now, implants in the one affected ear since I was 4 - it is amazing what science can do.  Even in '89 they were able to keep my hearing almost perfect - I'd say an 8 out of 10.  Anyway, like all parents, you can't wait until they say their first words, but when they hit adolescence you wish they'd just shut up.  This may just be a blessing in disguise.  I'm joking some, but the real point is they caught it and you're gonna be okay and you'll be able to be with your kid while he/she is growing up.  There is a silver lining to everything, it's just not always the easiest thing to see through the haze.  Also, you now have experience to help you if this should ever present itself in your kid.  Good luck and speedy recovery to you.

          Zach
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Marlee91
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Posts: 7


« Reply #2 on: May 06, 2012, 03:03:52 AM »

Hi j!

I am a 'walking bomb' my ctoma is so bad in my right ear it is eating away all my bones of hearing, and is twisted through all my nerves and if the very minimal bone I have left break my nerve that pumps blood to my brain will fall either causing a stroke or death, at current that nerve is being squished into my skull. Although this sounds so severe and I'm listed as high priority I still have no hospital date! Sad very scary!

All the best though from what I've read from everyone they seem to pull through!

Feel free to read my story Smiley
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J
Newbie
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Posts: 7


« Reply #3 on: May 12, 2012, 07:25:44 AM »

Hi guys and thanks for your reply! Not like you come across people who have or has had ctoma very often, so not many to exchange experiences with...Marlee, have you gotten you date yet?

I went back to get my CT results. Judging from them, the ctoma is in the middle ear only. The inner ear as well as my facial nerve seem intact. There was much soft tissue upwards which is probably ctoma, but the bone was still intact to my brain. Some bones gone, some bones there. Left ear was fine, but my ear drum is very retracted so we are going to do something about that to prevent a ctoma there as well. I had the option of going in as a private patient (I'm in Australia) or a public patient. Waiting list for private would be about 6 weeks, for public 12 weeks. I signed up for the public surgery to go home and talk about and discuss the private option, but received a letter yesterday that my (public) surgery is scheduled already at June 6.

I was so concerned about the ctoma itself and the CT results that it hadn't crossed my mind to think about post-op questions, so I'm going to have to call him back on Monday for some. I asked the doctor about chances of it coming back, and he said that there are two types of possible surgeries, and with the one I am having it shouldn't come back. I think the surgery I will have was a radical mastoidectomy....Anyone got any experience with this surgery? Main question will be when I will be up and running again! Of course that is individual and depends on so many factors, but should I start with only taking days of work or weeks? Doc said I'd suffer from vertigo, pain and hearing loss (initial). From what I can read here many also suffer from weird taste buds.

Ok, time to go to sleep. Mothers day here tomorrow and my gorgeous girl (3yo) has already told me that she has gotten me a new jumper which is rainbow coloured, lol!! =)

/J

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dtrock78
Newbie
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Posts: 3


« Reply #4 on: May 29, 2012, 04:10:53 PM »

Hey J,
I just got the surgery.  My doctor described the two basic types "Canal wall up" and "canal wall down".

The canal wall down type is when they actually carve out a section of your porous bone in your cheek/skull area.  This is a more agressive way to deal with it.  But sometimes the cavities that are left need to be "jetted and cleaned" every 12 months, which must be a pain in the @ss.

I had a canal wall up procedure done, the problem with that is there is a higher chance of it coming back.  When is your surgery scheduled for?
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J
Newbie
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Posts: 7


« Reply #5 on: May 29, 2012, 04:27:03 PM »

Hi!

I'm pretty sure I'm having the canal down. I asked him about chances of it coming back, and he said what you explain, that there are two types of surgeries and that it shouldn't come back with the one I'm having. He was also pointing at places behind my ear where the bone would be drilled away.

My surgery was scheduled for next Wednesday (June 6) but I received a letter yesterday that it was postponed to July 4 because the doctor had to attend operation elsewhere on that day. Sort of good because I will be able to attend my friends wedding on June 9, but I would have liked to have it removed to, obviously.

How are you coping now post surgery? Pain? Dizziness?
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dtrock78
Newbie
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Posts: 3


« Reply #6 on: May 29, 2012, 07:32:55 PM »

No dizziness, that usually occurs when it reaches the inner ear, at which point it gets pretty serious.

I'll be honest. The pain was pretty bad for me for 2 days, but all my doctor gave me was Tylenol with codeine...

I just posted my whole story up today, check it out in the personal story sectiok me n and feel free to ask me any questions you have.
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shoop
Newbie
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Posts: 11


« Reply #7 on: July 11, 2012, 10:17:47 PM »

Karma,  Please don't lay awake at night worring about being a ticking time bomb.  Believe me, I've worried enough for all of us these posts. .  I have CT in both ears pretty extensively. A month ago I had my 1st surgery on the less invasive ear because of the pain I was having.  My doctor has reassured me the CT grows very slowly and that even if it does start to invade past the bone, they can take care of it.  My 1st surgery was in June and I have to wait till at least November  for the reconstructive surgery.  Then after The rt ear is healed next spring will be my first surgery in the left ear which seems like eternity, but hang in there, you're on the right track.
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bstan
Newbie
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Posts: 2


« Reply #8 on: July 26, 2012, 03:49:15 PM »

C-tomas can be fairly aggresive and should be dealt with as fast as possible. I have a whole in my right ear canal i could probably smuggle stuff with. I cant hear much out of it but luckly I didnt have any nerve damage. I may have a recurrance in my left ear which thank god I can hear out of that one fine. Just hope its not a recurrance. I go back in a month for a check up after he cleaned it out and sprayed antibiotucs in there.
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penny18
Newbie
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Posts: 11


« Reply #9 on: September 03, 2012, 11:58:45 AM »

Hi j Grin

Ive just been diagnosed with c toma in both ears a couple of 3 mths ago and 8 wks this wed i had my 1st op in my right ear.

i have ear probs since the age 1 and its only after having flu and bouts of colds caught from my two children last winter and nagging my gp to see someone about my constant prob with my ear, which turned out to have a massive infection.

eventually got an appt with ENT and he diagnosed me with c toma.

my ear is popping, crackling, feeling full and basically irrataing me. Im waiting for my post op check so hopefully things will be ok although i do worry about it all really.

Hope you are well

penny
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