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Author Topic: Newbie! Waiting for surgery  (Read 4722 times)
Marlee91
Newbie
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Posts: 7


« on: April 17, 2012, 03:45:49 AM »

Hi! All my life I've experianced hearing loss, you never know quite how bad it is because you don't know what normal hearing is supposed to sound like. I remember bleeding from my ear a few years ago and the drs putting it off to a bad ear infection. About a year ago I went to my gp for unrelated matters and I asked him to check my ears (completely random) he then informed me that he thinks I had a hole in my ear drum and I need to see a ENT specialist. So off goes the referral and around a year later I got my appointment. First off they did a hearing test and upon further examination told me a I had a C-toma. Severe in my right and not as aggressive in my left! Upon having an MRI scan and a ct scan I went back and was told just how serious it was. So severe he even asked permission if I would let practice drs examine me as he'd never seen something so bad in some one my age (20) he told me he presumes I was born with this and is dumb founded it was never picked up on from all previous ear infections. He also can't believe I don't get ear leakage other than the bleeding one time. He turned to me and said you have a severe problem. The C-toma in my right ear has destroyed my bones of hearing so badly that my facial nerve is twisted in the c-toma and the main vein that pumps blood to my brain is at risk of falling (if the little amount of bone I have left breaks) causing me to have a severe stroke. He told me that as I suffer with tonsillitis I need to have my tonsils removed first as a bout of it whilst being treated for c-toma may affect me immensely. It's funny, I've always been clumsy, lost my footing, had poor hearing but never suspected it could be something so bad. Currently I await a surgery date for my tonsils to be removed then I'll have to wait again for my right ear surgery and again my left. Although I know how bad my right ear is I stay positive that my surgeries go well.

I'm happy to keep you all informed on my progress as I go through this shit thing!

Please if anyone could answer
What is the pain like?
How long between ctoma removal and reconstructive surgery?
And (i know it's vein) how much of my hair will they shave upon surgery?


Thankyou for reading Smiley feel free to ask any questions!
Marlee.
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shoop
Newbie
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Posts: 11


« Reply #1 on: April 30, 2012, 07:48:58 PM »

I'm a newbie' too!  Certainly not the newbie 'club' I wanted to join!  I just posted my 1st post...47 yr old just diagnosied in both ears. 
Unfortunatly I can't answer your questions.  I just wanted to wish you Good Luck!  Everything I've read is you will feel better after your surgery.  You may need future surgeries, but stick with it!  We're in a club all our own.
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Royt777
Newbie
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Posts: 14


« Reply #2 on: May 03, 2012, 05:15:47 AM »

Yes. All the best.
Tough that you have to wait so long for referral and surgery.
There wasn't any real pain when I had my surgery. For a week after I sometimes got a shooting pain in the ear that made me wince but I found it very short lived so 'got over it'.
As for the facial nerve, I understand that for a lot of people the doc needs to cut through it if the growth is engulfing it.  I was fortunate that mine was saved. It means I can still taste OK.  Smiley
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Marlee91
Newbie
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Posts: 7


« Reply #3 on: May 06, 2012, 02:36:32 AM »

Hi guys!
Thanks for replying Smiley I take such comfort in this message board Knowing I'm not alone! Been doing all my research trying to educate myself on this condition!

Yeah defiantly not a club I'm proud to be part of either but it's nice to know your not alone!
Still waiting for that surgery date though! Sad

Shoop, can't believe your 47 and just diagnosed! My first visit he told me I'd have 4 years before I was completely deaf, or dead for that matter. Then second visit he gave me under a year! Tucking time bomb for a stroke! Luckily for you it has been found though Smiley

And royt cheers! Put me at ease a little for the pain factor! I have I high pain threshold but the thought of basically having ear cut off scares the shit out of me! How much hair do they shave?


All the best <3
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shoop
Newbie
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Posts: 11


« Reply #4 on: June 14, 2012, 10:28:54 PM »

Post op 2 days now.  The first two days I slept most the time only to wake to take more pain killers and eat something.  I was told my surgery would be about 3 hrs, mine lasted 4.5 hrs. 
You asked about how much hair needs to be shaved....none in my case, and I  have a lot of hair.  The incision is barely visibly.  Just tons of swelling.  My tounge on the rt side -same side as the surgery is numb, and has the metallic taste everyone mentions.  There is a small amount of drainage, pretty normal. I'm just hoping the swelling goes own a bit as it goes halfway around the back side of my head and into the neck.  Will write more another time.  Good luck!
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tee
Newbie
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Posts: 1


« Reply #5 on: June 18, 2012, 03:39:35 AM »

Hi, I had mine on 11th june - was 5 hours.  The pain is still really really bad... I wondered if this was the same for anyone else or if I have unusually low pain barrier...or maybe its not normal?....also still bleeding etc....

Hope you are felling better than me!! :-) Tee
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shoop
Newbie
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Posts: 11


« Reply #6 on: June 19, 2012, 03:02:03 PM »

I had surgery 7 days ago and have a few suggestions, comments on what to expect.  I will be reposting this as a new thread for more newbies like us. 
I have C-toma in both ears, just diagnosed a few months ago.  Like many patients the dr. said the growth was more extensive than the CT scan.  Surgery lasted 4.5 hours and was the last one to go home from post-op as my surgery started at 12:30pm, and was discharged at 9:30pm. I still can't believe this is considered a day surgery. 

Stay ahead of the pain: regardless what you are prescribed, take it!  Your pain is real.  Not totally unbearable but am glad my husband set the alarm clock at 3am to give me my next dose.  I took the prescribed pain killers for the first 4 days, now just occasionally & at night to help sleep.  I have A LOT of jaw pain (still can't clench my teeth )and pain right behind the ear.  About every 20 minutes I get a strong shooting pain either in the ear or temple area.  It lasts only a few seconds, but stops you in your tracks!

Glasses/Stitches:  The stitches are barely visibly, only my glasses hurt if they are on too long.  Cotton balls help. The bow on my glasses had to be removed until the ear patch could be taken off.

Sleep:  the first few days I was pretty much drugged up and slept constantly, only to use the restroom & drink/eat.  Get a REALLY soft pillow and a few of your favorites.  I had rt ear surgery and am a rt side sleeper so kept wanting to rollover onto that side.  Solution....my daughters "Pillow Pet"!  It's super soft and by day 6 am finally able to position pillows to sleep.

Shower: I had someone wash my hair in the sink the first few times, but thought this can't go on forever, so did as the dr said, stuck a cotton ball in my ear & lathered the outside with Vaseline.  I found at my grocery store these small plastic tops, which look just like a shower cap for a doll.  The fit over bowls and cups.  The smallest size fits perfectly over the ear as added protection.  Call me paranoid  Undecided

Dizziness, That's real too.  Not everyone mentions it on these posts, but at times, mine is awful! I had 2 ear bones removed, still have "packing" in there, still slightly swollen and very tender, so I'm hoping it's not long lived.  Mine isn't to the point of not being able to walk, but definitely have a case of vertigo going on.  The dr prescribed anti-nausea/dizziness pills that melt on your tongue, but for me they are very short lived. 

Taste/Tongue: yep, they're effected too! The right side of my tongue is numb and has the metallic taste also.  It's actually not as bad as I expected and am told it's short lived....few months.  Many things don't taste right, especially coffee!  I used to drink pots of it, and now can barely have a full cup.

Ringing/Hissing: this is the one post op maladies I wish would STOP!  It's non-stop, even when I wake up in the middle of the night.   SadAngryEmbarrassed. I pray at my postoperative appointment and the packing comes out it will subside.
   The packing...I can't see any in the ear canal but was told it is there .  I started to used the prescribed antibiotic ear drops today that actually felt kind of good.

Sounds/Talking:  too much noise actually hurts.  My husband has a very deep voice, and low tones seems to 'annoy' worse.  Sorry Hun!   My own voice talking louder seems to resonate /reverberate /echo inside my ear.  I thought what next!!  Hopefully this is short lived too.  The softer I talk, there is no resonating in my head. 

Not so funny....take the prescribed/recommended stool softeners!   Embarrassed.


I hope my experience and personal tips help in any way.  Best Wishes to you!
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Manuel
Newbie
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Posts: 4


« Reply #7 on: June 20, 2012, 08:59:44 AM »

Well, I personally had a 5 hour surgery in January and pain was not an issue. Lots of painkillers the first week, and first 2-3 days really a lot, but I could smile at any time Smiley. No hair needed to be shaved of and I had my stitches removed after 14 days.
My facial nerve, hearing bones, tear nerve and balance where all effected, but besides my balance I feel quite ok. Good luck and yes, the positive approach is the best. You'll be ok soon belief!

Abrazo fuerte Manuel.
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