Subject ....err...ummm......help?

[Guest guest]

Hi guys

well i just went in for my c/t scan yesterday the docter has

predicted cholesteatoma but went in for a scan to confirm. Im 19

years of age and have had glue ear and all that since i was a child i

have had 2 skin grafts on my ear drums, swimmers ear and tinites.

lately iv just felt real off its hard to exlaine , really low energy,

emotional, vometing, and really dizzy and my co-odination is going,

its weird ya just dont feel normal its like your in a bubble, or

under water with so much presure! Has anybody alse had theese

symptoms? Do you ever get rid of this desease, ENT havnt told me that

much a about it so would apreciate any information? or exeriences!

Thanx,

Ginnaya

[Guest guest]

Hi Ginnaya,

Welcome to the group. From the symptoms you write about it sounds to me that your c-toma is quite extensive. When do you see your ENT again?

Surgery is the only know treatment for cholesteatoma. Some people have to have multiple surgeries and cleanings for the rest of their lives. I don't want to scare you so I am going to refer you to the "links" sections, then click on the Bank of Bookmarks. There are a lot of informative articles in there and is a good place for you to start. I am sure you will have a lot of questions after reading some of the bookmarks and there are plenty of us who will respond.

I am certain you will hear from other members with symptoms similar to yours. My husband has bilateral c-toma and has been c-toma free in the left ear for almost 3 years now and since January in the right.

Please keep us posted. We are one big family here and we do care.

Michele

ginnaya wrote:

Hi guyswell i just went in for my c/t scan yesterday the docter has predicted cholesteatoma but went in for a scan to confirm. Im 19 years of age and have had glue ear and all that since i was a child i have had 2 skin grafts on my ear drums, swimmers ear and tinites. lately iv just felt real off its hard to exlaine , really low energy, emotional, vometing, and really dizzy and my co-odination is going, its weird ya just dont feel normal its like your in a bubble, or under water with so much presure! Has anybody alse had theese symptoms? Do you ever get rid of this desease, ENT havnt told me that much a about it so would apreciate any information? or exeriences! Thanx,Ginnaya

[Guest guest]

really low energy, emotional, vometing, and really dizzy and my co-odination is going, its weird ya just dont feel normal its like your in a bubble, or under water with so much presure! Has anybody alse had theese symptoms? Do you ever get rid of this desease

Hi Ginnaya

A lot of people do get some kind of balance problems with Cholesteatoma.It's a skin growth which puts pressure on and may erode the bone surrounding the middle ear. Some of this bone protects the semicircular canals ( the balance part of the inner ear). The inner ear is very sensitive and just a slight touch will stop it working properly. The functon of this balance system is to send messages to the brain which it uses to control your eye movements. If one of the systems isn't working then you'll always be veering off to one side or misjudging space when you try to pick things up etc. The brain is very subtle though and tries to compensate for this by pushing you rapidly you back into the other direction - it's this unconscious reaction which causes the violent spinning sensation, the motion sickness and all the rest of it. If you have the dizziness all the time and not just at intervals then it is quite possible that the semicircular canals have been damaged permanently which would mean you would still have a balance problem even after they remove the c-toma. Not to worry though, your brain will adjust to the situation over time and the dizziness will stop. Balance problems are exhausting because you have to work much harder to do simplest things that normally you would take for granted. You have to become more visually dependent just to get around - you may find that you fall over if you try to stand up with your eyes closed - you lose the innate sense of where your body is in space.

The 'underwater' sensation is exactly how I've always described it to people. Perhaps it has something to do with the sense of space but mostly I think it's a result of blocked up ears (pressure) and conductive deafness.

Phil

[Guest guest]

Thanx for you responce, helped allot! just woundering if you new what

Homogeneous soft tissue is and also what part of the ear is EAC.

Medicle Gargin to me!!

Thanx,

Ginnaya

> really low energy, emotional, vometing, and really dizzy and my co-

odination is going,

> its weird ya just dont feel normal its like your in a bubble, or

> under water with so much presure! Has anybody alse had theese

> symptoms? Do you ever get rid of this desease

>

>

> Hi Ginnaya

>

> A lot of people do get some kind of balance problems with

Cholesteatoma.It's a skin growth which puts pressure on and may erode

the bone surrounding the middle ear. Some of this bone protects the

semicircular canals ( the balance part of the inner ear). The inner

ear is very sensitive and just a slight touch will stop it working

properly. The functon of this balance system is to send messages to

the brain which it uses to control your eye movements. If one of the

systems isn't working then you'll always be veering off to one side

or misjudging space when you try to pick things up etc. The brain is

very subtle though and tries to compensate for this by pushing you

rapidly you back into the other direction - it's this unconscious

reaction which causes the violent spinning sensation, the motion

sickness and all the rest of it. If you have the dizziness all the

time and not just at intervals then it is quite possible that the

semicircular canals have been damaged permanently which would mean

you would still have a balance problem even after they remove the c-

toma. Not to worry though, your brain will adjust to the situation

over time and the dizziness will stop. Balance problems are

exhausting because you have to work much harder to do simplest things

that normally you would take for granted. You have to become more

visually dependent just to get around - you may find that you fall

over if you try to stand up with your eyes closed - you lose the

innate sense of where your body is in space.

>

> The 'underwater' sensation is exactly how I've always described it

to people. Perhaps it has something to do with the sense of space but

mostly I think it's a result of blocked up ears (pressure) and

conductive deafness.

>

> Phil

[Guest guest]

Hi Ginnaya

Yeah I've heard of this "homogenous soft tissue" is how they sometimes describe a tumour - I guess that's a reference to the the cholesteatoma itself - it being made up of just one thing (homogenous) i.e. skin. EAC is medical shorthand for the Ear Canal (External Auditory Canal)

Phil

Thanx for you responce, helped allot! just woundering if you new what Homogeneous soft tissue is and also what part of the ear is EAC. Medicle Gargin to me!!Thanx,Ginnaya> really low energy, emotional, vometing, and really dizzy and my co-odination is going, > its weird ya just dont feel normal its like your in a bubble, or > under water with so much presure! Has anybody alse had theese > symptoms? Do you ever get rid of this desease> > > Hi Ginnaya> > A lot of people do get some kind of balance problems with Cholesteatoma.It's a skin growth which puts pressure on and may erode the bone surrounding the middle ear. Some of this bone protects the semicircular canals ( the balance part of the inner ear). The inner ear is very sensitive and just a slight touch will stop it working properly. The functon of this balance system is to send messages to the brain which it uses to control your eye movements. If one of the systems isn't working then you'll always be veering off to one side or misjudging space when you try to pick things up etc. The brain is very subtle though and tries to compensate for this by pushing you rapidly you back into the other direction - it's this unconscious reaction which causes the violent spinning sensation, the motion sickness and all the rest of it. If you have the dizziness all the time and not just at intervals then it is quite possible that the semicircular canals have been damaged permanently which would mean you would still have a balance problem even after they remove the c-toma. Not to worry though, your brain will adjust to the situation over time and the dizziness will stop. Balance problems are exhausting because you have to work much harder to do simplest things that normally you would take for granted. You have to become more visually dependent just to get around - you may find that you fall over if you try to stand up with your eyes closed - you lose the innate sense of where your body is in space.> > The 'underwater' sensation is exactly how I've always described it to people. Perhaps it has something to do with the sense of space but mostly I think it's a result of blocked up ears (pressure) and conductive deafness.> > Phil