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 91 
 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.

Cheers,

Ash

 92 
 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

Regards
gkveda

 93 
 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

Regards

gkveda

 94 
 on: February 28, 2013, 08:20:37 PM 
Started by yaallgo - Last post by yaallgo
Quote
Community Interview by Anook  with GW2 Lead Designer: Isaiah Cartwright
Anook.com - 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.

Indeed.

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!

 95 
 on: February 20, 2013, 06:56:11 AM 
Started by megara4041 - Last post by Marlee91
Hi!

Have you had your surgery?

Smiley

 96 
 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

Marlee
Perth. Western Australia

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

 97 
 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!

 98 
 on: December 31, 2012, 03:37:37 PM 
Started by meagan - Last post by shoop
Megan, I do hope your dizziness and vertigo have subsided! I had my 2nd surgery a month ago where I now have prosthetic titanium bones.  That's the good news, the flip side of this is I'm dizzier than a bat!  I have my first vestibular therapy appt this coming week.  Since my surgery a month ago the vertigo has actually worsened.  My dr says the crystals in the ear have dislodged causing the vertigo.  Also, I'm praying the gel foam starts to dissolve soon as I still have no hearing I that ear.  I've heard it's  supposed to be dissolved within 6 weeks.
Do you still have your dizziness?  Can you describe the therapy you've had. 
Good luck to you & thanks!

 99 
 on: December 11, 2012, 11:23:39 AM 
Started by johnroth - Last post by johnroth
Thank you for the reassuring words, Meagan. I saw my doctor again today after have the CT scan done last week. He said that it looks like the colesteatoma has been eating away at my mastoid, but everything else looks fine and intact, so it hasn't damaged anything else. It is big though, and it's been filling any pocket of air available in my ear. If I don't get a surgery as soon as possible, more extensive damage to the other bones is going to occur. As it is I'm going to have to get a mastoidectomy or whatever and have a prosthesis put in.

None of that is good news, but the doctor said I'll be fine otherwise. It hasn't affected my facial nerve or my balance stuff, so I guess I'm lucky in that way...

 100 
 on: December 07, 2012, 07:32:12 PM 
Started by johnroth - Last post by meagan
I think your Dr. would know if yours had progressed to a dangerous stage like that.

The 4-5 months leading up to my surgery I couldn't hear anything out of my affected ear and the pain/ringing/itchiness in my ear was so bad that I cried at night sometimes. I was like that for months (I was planning a wedding/getting married/honeymooning at the time so I didn't take the time to get my ear checked out) and while my ctoma was pretty bad, I was no where near dying.

I would try to relax if I were you, as hard as that may be.

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