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 on: March 20, 2013, 08:52:22 PM 
Started by JaneyJane - Last post by belfastbaz
Hi Jane,

I too have suffered a lot over the years with Cholesteatoma.  I'm up in Belfast, and go to the Royal Victoria Hospital.  I'm scheduled to go back towards the end of April.

Headaches and earaches? Have you had, or do you have any pain or inflammation at the back of the ear (Mastoiditis)? Hearing loss or dulled hearing? Smelly discharge from the ear? Dizziness? Are you getting any treatment for the pain (painlkillers)? Are you on ear drops and/or antibiotics?

Judging by what I'm reading from you, I would go back to the ENT unit and tell them of your concerns.  If you think your Cholesteatoma has returned, TELL THEM.  In my own experience, Cholesteatoma can be notoriously difficult to diagnose and they might not even consider it unless you mention it to them.  That's what happened with me.

With my last bout in my left ear last year, I had to literally fight with my GP to send me to the hospital, and had to fight with the hospital to look at me.  I had it before, and knew deep down it had returned, and I said as much to my doctor, and to the registrars once I finally got an appointment.

But if what you're suffering from was happening to me, I would INSIST upon a CT scan.  They may want to "look at other avenues" first - let them, because if effective treatment works, that may well rule out C-toma.  They will want to rule it out before, shall we say, ruling it in.  If treatment doesn't work, then at that point, they may send you for a CT scan.

Give me a shout if there is anything else you're concerned about.  If I don't know, I can ask my consultant when I see him again hopefully next month.
Below is a link to where you can see my posts of the struggles I have had with this.  Feel free to add me on facebook if you want to, though make sure you send a message and mention Cholesteatoma, as I don't otherwise add people unless I know them directly.

Let me know what happens, and good luck.

Barry  Grin

 on: March 17, 2013, 04:47:39 PM 
Started by JaneyJane - Last post by JaneyJane
Hello All! I am an Irish member in my mid thirties who would love some advice! I had a cholosteatoma operation two years ago and it went well. I return for check ups every 6 months. However constant headaches and earaches whenever I get congested are getting me down. Is it normal to suffer from head and earache so regularly? For 3 weeks now I have constant ear and head pain as well as a metallic taste in my mouth.
Our health system is somewhat flawed and I am tempted to ask for another CT scan as am terrified this thing will come back. My last visit to the ENT centre a few months ago went well. They took a quick look and said it looked fine. Generally I meet a different doc every time I go.  My question is this: do all of you who have had this op suffer like this or would you insist on another CT scan? Many Thanks, Jane.

 on: March 14, 2013, 08:26:45 PM 
Started by ash - Last post by ash
I thought I'd drop back in today and see what is new.

My daughter had surgery at the end of last year. She went in expecting the worse but with an unknown if it was c-toma or not. We were told beforehand that there was a 30 in 1 chance she would come out with both ears removed. It looked that bad that the ENT specialist did not have much hope. 45 minutes after a really hard wait, she came out like nothing had happened. She was her happy cheeky self and was not long till she was having an ice cream. The fluid build up was one of the worst the ENT had seen. But no c-toma!!
She had grommets put in both ears to assist in draining but we were told if it was much longer, it was only a matter of time until c-toma was going to develop in both of her ears.
Her hearing is now better and had a check up last week which confirmed things were still good and the grommets were still in place.
She started school this year and is learning sign language in class. There seems to be quite a few deaf kids at her school so for every new letter or sound they are taught each day, they are also taught the corresponding sign for as well. Which is fantastic! She is teaching me as we go and are even slowly starting to sign to each other across the house.

My ears on the other case are doing ok. I figured out what was causing the bleeding in my ears and nose. I am a woodworker and it was due to constantly breathing in saw dust. I had a short brake from it and the bleeding stopped. Shows just how hazardous some dusts are so I now refuse to work with it and have pretty much ceased it. I have been mostly spending my time being a Dad and doing what ever else I can to make a dollar while the kids are at school. I've gone back to uni to change career while my wife has been working her but off as well. Things are tight but life is good. Fingers crossed we can both keep on top of the ear issues from here on in for both me and my daughter.

 on: March 14, 2013, 08:12:30 PM 
Started by Marlee91 - Last post by ash
Hi Marlee,

I'm in Australia too. I don't visit here that often but thought I'd drop in today. I'm near Newcastle in NSW.

It is pretty uncommon to run into someone else in Aus who has been through a similar case. I know there are quite a few out there who have but it's not that common to see in person.

I've been fighting this bloody thing for 13 years now. It's changed my life in more ways then I can explain. Some for the better, some not so. I would say my case is pretty extreme to most but some have it worse. I did come close to being one of those who could have lost their life to it but I'm still here kicking along.

My biggest hatred of this damn thing is I've passed the gene on to my daughter. She too is now having issues and thankfully we go it before it progressed too far. It damn well brings a tear to my eye every time I think about it. She is such a tiny little girl and this is the last thing she ever deserves. She started school this year and it is great that her teachers are treating her well and making sure she can hear what they are saying. They are teaching the class sign language which she is also teaching me as she goes.

I find it hard to deal with, even after all this time. If at ever you wish to have a chat, feel free to get in touch.



 on: March 05, 2013, 11:50:41 PM 
Started by slsawyer - Last post by gkveda
Hello all
Can one of you tell me how many days did  you guys did not have taste sense ? I am currently in the same stage where I have no sense of taste. I got operated on 22nd dec and today, it is 6th March. It is almost 2.5 months since i lost taste..

When should i expect this insensitivity to go away? is there any medicine that can expedite the process ?

Please reply


 on: March 05, 2013, 11:34:14 PM 
Started by Marlee91 - Last post by gkveda
Hi Marlee
It is really good to know that you are out of danger and the surgery was successful. Right now, i am in the initial stages of Post surgical period. My surgery was done on December 22nd 2012 and since last 2-3 weeks, the pain in the inside of the ear has vanished. After the doctor removed my ear pack, there was loads of liquid discharge from the ear. However, now it has reduced to a great extent.

But, Still, i see some liquid discharge whoozing out of my ear. Another bigger problem for me is, My taste sensation has been destroyed completely and till date(Almost 2.5 months after the surgery), it has not recovered. Not able to sense any taste on my right side of the toungue till date.

Am curious to know
1. how long the liquid discharge will continue ?
2. How long the taste insensitivity continue ? Will i regain my taste back?

Your answer to this will be of great help and will relieve me of Anxiety.. Please reply



 on: February 28, 2013, 08:20:37 PM 
Started by yaallgo - Last post by yaallgo
Community Interview by Anook  with GW2 Lead Designer: Isaiah Cartwright - recently had the chance to sit down with Isaiah Cartwright the Lead Designer of Guild Wars 2 and ask him some of the questions that was asked on the Anook community page!

Wait Anook? What is Anook?
Anook is a new social network for gamers. It allows you to separate your gaming life and real life by taking away and combining gaming related news from your Facebook/Twitter on Anook. It has become progressively popular over the last few weeks and with a sudden growth in users it lead to us getting requests to start a GW2Guru page, which we did

You can find our very own Guru 'Nook' here: Anook (GW2Guru)

What was asked and where do we go?
Want to read the rest of the questions and the answers? Then click Here for the interview.

So they are actually going to do a Armory/profile, it's just a matter of when. I hope it's view-able in-game as well as off-game webpage.


Looking so much forward to all the awesome apps/websites people will create with special feature related to it!
I really enjoy Anook as a social network. Rediscovered it because of that GW2 tweet, and I'm gladly getting active there. It's really a great tool to share and search information about our favorite guild wars 2 gold games.

Arenanet didn't say anything about a new Fractal including Quaggan though. I soooo want it!

 on: February 20, 2013, 06:56:11 AM 
Started by megara4041 - Last post by Marlee91

Have you had your surgery?


 on: February 20, 2013, 06:36:49 AM 
Started by Marlee91 - Last post by Marlee91
Ok guys, I'm back!

What a long and painful journey this has been, from my ent referral to my first operation it's been 18 months. 6 months out and I could say this is the hardest thing I've ever done. Surgery went well, had partial wall down right ear mastoidectomy removed majority of ctoma except for what was attached to my facial nerve. Woke up nursing 14 staples behind my ear and 4 stitches inside. Lasted the night with panadol only. Pressure bandage was intense though. It's so bloody tight! Once that came off tho I think I preferred it on, having part of my head shaved with ugly staples on it was not nice, but could've been worse. Went home with strong painkillers. Off work for about 3 weeks. Wound behind ear isn't too painful it's inside the ear that hurts more. Then the staples come out and the wadding inside your ear, followed by them shoving a vaccume in your ear to clean out gunk, then they put fresh wadding in .... Have to say, that was the worst part! Almost lost consciousness in the chair why he did this. The feeling is indescribable. But I lived. Then came the constant 24/7 whoosh whoosh whooshing. Drove me insane for 2 weeks until wadding was taken out for good... Best feeling ever! I cried when I could finally hear the music out of my right speaker in my car again. After that I realised I had a great party trick! Hold my nose and blow air out of my ear and it made the loudest squeal! Almost like whales on a sonogram lol dr advised me at my check up not to continue doing this tho as I have 3 holes in my ear drum from surgery. Dues for MRI scan next month to check for regrowth! Fingers crossed all is good and we can move on to the next ear! Which I now have an annoying throbbing noise in! Lol

All in all. Surgery was worth it in my case so far, annoying things are not being aloud to wet you ear for months, the dizziness which I still get if I crouch down or get up too quick, and trying to do something with the patch of hair growing back haha. I also get strange sensation if I touch the outside of my ear, my tongue tingles. And I suffered from metallic taste for several months but it went away, although now some things taste gross! When I used to like them before!

Thanks for reading guys, look forward to reading replies Smiley

Perth. Western Australia

P.s is there any way I can share my pics with u guys??

 on: December 31, 2012, 03:55:38 PM 
Started by Larsson_101 - Last post by shoop
Hi Larrson & all, 
I was just fitted 4 weeks ago with a 4 mm PORP.  Surgery was much less painful than the 1st and only lasted a little over two hrs.  That's the good news as I wrote on another post.  Being 'only' 4 weeks ago, the Gelfoam has yet to fully dissolve so I still have NO hearing in that ear.  Also, the vertigo is horrible.  I have vestibular rehab scheduled, so hopefully it will help with the feeling of falling off my pillow at night!   Per my surgery report which I highly recommend everyone obtaining from their surgeon post op to educate ourselves, the PORP needed to be "placed on the capitulum at an acute angle".  I just pray it doesn't come dislodged which is a possibility and that I can start to hear sound soon. 
I would love to find out when others started hearing again after your prosthetic reconstruction.  Thanks!

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