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 on: March 27, 2013, 05:07:53 AM 
Started by penny18 - Last post by gkveda
I also feel the same sensation.. Actually, for me, the liquid used to whooze out regularly post Surgery. When i met Doctor, he said, the liquid is not usual infection discharge that used to be there  earlier. However, when the bone is exposed to atmosphere, the iodine content from the bone keeps discharging out. And as the skin grows over the bone, this discharge will stop.

Now, the discharge has completely stopped the ear is completely dry, since the skin has grown completely. However, when i sleep and turn from left to right OR right to left, i sense some fluid movement inside the ear.

My question is, can this fluid be removed by Doctor or will it dry out automatically inside ? This is very irritating since, I cannot do anything but just to experience the movement of fluid..

Please help what could be the solution to this situation

 on: March 27, 2013, 05:02:47 AM 
Started by Marlee91 - Last post by gkveda
Thanks for replying Marlee.
I had met my doctor a few days back and he said I will regain my taste sense by max 6 months (As you said)

But, I still have not regained the taste sense on my tongue. However, the discharge is complete stopped as the skin grew over the bones. This is the biggest relaxation for me in my life. I still have a peculiar problem which i will post a new thread..


 on: March 24, 2013, 06:58:23 AM 
Started by Marlee91 - Last post by Marlee91
Hello guys!

Thanks for replying and sorry it took me so long!

Unfortunatly i cant answer your questions. I was told to expext to lose mt taste and told it may return and it may not. For me,  i only lost it for a few days then it returned almost normal and just certain things i used to like and now didnt. The metallic taste lasted about 5 months. As for the discharge im also unsure. I dont get any discharge at all. I didnt before surgery either tho. But in saying that i have a few side effects like the tingling of my tongue if i touch the right side of my head and dr says it will probly be permanent. My specialist also that from here on out i will experience alot of strange things and not to stress to.much! Maybe visit your doc and he can put you at ease Smiley

Im so sorry you and your daughter have to go through this! Im glad they picked hers up early tho. One of the biggest annoyances of this for me is that i went to drs for years and years and never was is ir disvovered and now that im older it costs me time ofd work etc. I think it beautiful her class is learning sign language! I work with a 100 percenr deaf lady and beforw my op was told id lose 100 percent of my hearing. Thankfully i didnt. But although im positive i still have my lwft ear to go!!.. And yea very gr8 to c another aussie!! Ozzi ozzi ozzi <3

Not sure if u guys have read it but my full story is on the other discussion board. Go check it out if u havnt already! Have had my 6 moth mri scan and have appointment in 3 days to find out how everythings going!

Stay in touch lovelies!


 on: March 22, 2013, 01:24:38 AM 
Started by penny18 - Last post by bgrsht
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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



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