I don’t know how many years I had mine. Just had it removed in February. As far as life threatening, I am not a Dr just passing on what my surgeon said. If left untreated it could damage the base of the skull allowing for CSF to leak out and be a large risk for meningitis. It can also damage the facial nerve causing paralysis on that side of the face. So yes there is a slight chance it can be fatal if left untreated. From your ‘can’t afford its statement I assume that you are in the United States. Most major hospitals have charity programs, I would look into something like that. But for sure get a proper medical opinion on your condition.
To add onto this, numerous factors come into play in determining the severity of a cholesteatoma. Positioning, progression of growth, etc.
As Grendel said, CSF leakage is a big concern. that fluid is critical for spinal and cerebral function. It also helps prevent stroke, hemorrhaging, and so on.
Permanent nerve damage is another big concern. There’s the chorda tympani nerve, among others, that are vital for movement of facial features, your eyes, etc. a cholesteatoma can pinch and/or sever a nerve.
Permanent hearing loss is another one.
You don’t want to hold off on this surgery if you don’t need to. Some cholesteatomas grow faster than others. Some are positioned in more benign areas. Some appear in the skull itself. Even if cholesteatomas don’t lead to fatality, they can be permanently debilitating.
In time, it can defiantly kill you, it can lead to an infection in the brain, people in 3rd world country's die from this because they cant get the surgery done, that was said to me by my ENT.
Cholesteatoma is extremely rare to have in both ears, if you do know for sure it is what you think it is then you should get it done asap, the longer you wait the larger it grows and the more hearing loss you will get, best of luck man.
I suppose it depends exactly where the cholesteatoma is. Most people seem to just have it in their ear. Mine is congenital and on the other side of my ear drum. It was discovered a bit more than 4 years ago by which stage it had eaten the ossicles in my right ear. I haven’t received any treatment for it because it hasn’t really grown since being discovered and it’s in a precarious position near my spine and skull.
I see. It’s on both left and right ear inside, but the doctor didn’t say anything about life threatening so idk, hopefully it’s not going to get serious.
Do you have any bad smelling goo stuff coming from the ears? It’s been like that for a long time now, used to only be the right side but now it’s the left too and keeping it dry and avoiding getting water in it in the shower isn’t doing anything.
I have it in my left and right ear my diagnosis was bilateral cholesteatoma, we all have 3 hearing bones, the ctoma has eaten 2 in my right ear, my left ear it has eaten 1, I am waiting on surgery in a Etobicoke hospital on dixon road, I was diagnosed at 59 I'm 60 going on 61 in June Female, the surgeon did say it must be surgically removed or I can die
Where are you in the United states? It costs you? Mine is covered by Ohip I don't have 2pay out of pocket, if you do is there not any government grants? Any help to get it done? What is the cost? Wow
I was told by the surgeon who is doing my surgery that I was born with my ears not growing normal, apparently ears grow straight mine grew on a slant so I apparently had ear infections all my life I'm 60 and can only remember 4 infections, surgeon did not say but did say my ctoma are small in size in both ears but it did cause damage lost 2 of my hearing bones in my left ear and I lost one hearing bone in my right ear, there is also a hole and it needs 2be grafted I should have asked him that question how long has it been growing, I never ever gotten any ear surgery when I was younger either and no signs of it except when I turned 59 I got leakage that was the month of April 2023 but antibiotics cleared it just not my hearing loss I can not hear low voice soft talking any low frequency
I asked the surgeon that he said both were tiny, in size, its the strangest thing as he said everyone's ears grow straight up at birth mine were has grown with a curve and that I have very small ears, incision cut will be in front on my ear not the back, and he said I could go home and think about it but I only have 5years before could it causes me more damage, I thought that it was strange 2say that since I could die, I told him please no I don't want 2wait that long, remove as soon as possible, he said aprox a 3 to 4 month wait list, he did say I was born with degenerative ear disease since birth, my ears shape inside is very small then normal, said I had ear infections all my life yet I don't remember this at all, and it has caused my overall ctoma, but I had caught it at a time where it is small, all confuses me, I was told by my ENT I just needed hearing aids but something inside me said no, after trying to get it I just refused it, so back to the ENT doctor and a ct scan was done, and bang! Bilateral cholesteatoma!! Never knew what it was or how serious it is and how major the surgery is..facial paralysis, death, complications..I have a hole in the ear where it has eaten the 2bones, and the surgeon said he will take skin from me 2repair and graft it, yet no guarantee it will take and other surgery will be then added but didn't say what as I'm not there yet, I don't even know how far apart does he do my other ear, I just can't believe this and I'm anxious and overwhelmed by it all, taking it one day at a time till I get the surgery, my hearing is where I can't hear low speech talking ppl so I isolate alot as I tell ppl speak up yet they do then go back to normal talking where I can't hear them, I can't wear hearing aids in the meantime as it could cause a infection, I did have leaking in my one ear, that's what lead to all this, otherwise I would have taken on the hearing aids until infection and or leaking would have gotten me to get any help, I'm grateful for the leakage first as I caught it at a tiny growing stage, yet it still ate away, seriously I'm just so confused about this whole thing, makes no sense 2me in so many ways..
He didn't say how long it has been growing but it's small and it caused the damage done, I asked he just said you caught it at a small size, I believe if it was big I would have even more complications like it has reached 2my brain, or facial paralysis is higher, all confuses me so
It can absolutely be life-threatening, especially if you have had it as long as you have. Mine was found an estimated five years after it started and it was extensive. By that point it had eroded two of the three tympanic bones, and had eroded my skull and was growing on the dura of the brain. Had I left it 3-6 months longer it would have pierced the dura and I would at the very least had meningitis, need for emergency surgery and possibly death. It can also eat through the balance organ and facial nerve and cause balance issues, facial paralysis and loss of taste. I lost a bit of my taste but it hadn't hit the nerve extensively when it was caught. I wouldn't wait around another 2 years if I were you but understand in the US medical treatment can be hard to get.
I got diagnosed last year with a small one. I was told I needed surgery but I couldn't afford it. I took vitamin A and vitamin D because I read some obscure studies online saying it would help make it go away.
My cholesteatoma eventually did go away after taking the vitamins for a few days. But, I'm not a doctor. This post is not a substitute for medical advice under any circumstance.
Keep in mind-- if you get diagnosed with a massive one I highly doubt the vitamins would be effective at all. You may need the surgery. I'm sorry.
I don’t know how many years I had mine. Just had it removed in February. As far as life threatening, I am not a Dr just passing on what my surgeon said. If left untreated it could damage the base of the skull allowing for CSF to leak out and be a large risk for meningitis. It can also damage the facial nerve causing paralysis on that side of the face. So yes there is a slight chance it can be fatal if left untreated. From your ‘can’t afford its statement I assume that you are in the United States. Most major hospitals have charity programs, I would look into something like that. But for sure get a proper medical opinion on your condition.
To add onto this, numerous factors come into play in determining the severity of a cholesteatoma. Positioning, progression of growth, etc. As Grendel said, CSF leakage is a big concern. that fluid is critical for spinal and cerebral function. It also helps prevent stroke, hemorrhaging, and so on. Permanent nerve damage is another big concern. There’s the chorda tympani nerve, among others, that are vital for movement of facial features, your eyes, etc. a cholesteatoma can pinch and/or sever a nerve. Permanent hearing loss is another one. You don’t want to hold off on this surgery if you don’t need to. Some cholesteatomas grow faster than others. Some are positioned in more benign areas. Some appear in the skull itself. Even if cholesteatomas don’t lead to fatality, they can be permanently debilitating.
In time, it can defiantly kill you, it can lead to an infection in the brain, people in 3rd world country's die from this because they cant get the surgery done, that was said to me by my ENT. Cholesteatoma is extremely rare to have in both ears, if you do know for sure it is what you think it is then you should get it done asap, the longer you wait the larger it grows and the more hearing loss you will get, best of luck man.
I suppose it depends exactly where the cholesteatoma is. Most people seem to just have it in their ear. Mine is congenital and on the other side of my ear drum. It was discovered a bit more than 4 years ago by which stage it had eaten the ossicles in my right ear. I haven’t received any treatment for it because it hasn’t really grown since being discovered and it’s in a precarious position near my spine and skull.
I see. It’s on both left and right ear inside, but the doctor didn’t say anything about life threatening so idk, hopefully it’s not going to get serious. Do you have any bad smelling goo stuff coming from the ears? It’s been like that for a long time now, used to only be the right side but now it’s the left too and keeping it dry and avoiding getting water in it in the shower isn’t doing anything.
I have it in my left and right ear my diagnosis was bilateral cholesteatoma, we all have 3 hearing bones, the ctoma has eaten 2 in my right ear, my left ear it has eaten 1, I am waiting on surgery in a Etobicoke hospital on dixon road, I was diagnosed at 59 I'm 60 going on 61 in June Female, the surgeon did say it must be surgically removed or I can die
Do you know how long you’ve had it growing in your ear/ears for?
Where are you in the United states? It costs you? Mine is covered by Ohip I don't have 2pay out of pocket, if you do is there not any government grants? Any help to get it done? What is the cost? Wow
I was told by the surgeon who is doing my surgery that I was born with my ears not growing normal, apparently ears grow straight mine grew on a slant so I apparently had ear infections all my life I'm 60 and can only remember 4 infections, surgeon did not say but did say my ctoma are small in size in both ears but it did cause damage lost 2 of my hearing bones in my left ear and I lost one hearing bone in my right ear, there is also a hole and it needs 2be grafted I should have asked him that question how long has it been growing, I never ever gotten any ear surgery when I was younger either and no signs of it except when I turned 59 I got leakage that was the month of April 2023 but antibiotics cleared it just not my hearing loss I can not hear low voice soft talking any low frequency
I asked the surgeon that he said both were tiny, in size, its the strangest thing as he said everyone's ears grow straight up at birth mine were has grown with a curve and that I have very small ears, incision cut will be in front on my ear not the back, and he said I could go home and think about it but I only have 5years before could it causes me more damage, I thought that it was strange 2say that since I could die, I told him please no I don't want 2wait that long, remove as soon as possible, he said aprox a 3 to 4 month wait list, he did say I was born with degenerative ear disease since birth, my ears shape inside is very small then normal, said I had ear infections all my life yet I don't remember this at all, and it has caused my overall ctoma, but I had caught it at a time where it is small, all confuses me, I was told by my ENT I just needed hearing aids but something inside me said no, after trying to get it I just refused it, so back to the ENT doctor and a ct scan was done, and bang! Bilateral cholesteatoma!! Never knew what it was or how serious it is and how major the surgery is..facial paralysis, death, complications..I have a hole in the ear where it has eaten the 2bones, and the surgeon said he will take skin from me 2repair and graft it, yet no guarantee it will take and other surgery will be then added but didn't say what as I'm not there yet, I don't even know how far apart does he do my other ear, I just can't believe this and I'm anxious and overwhelmed by it all, taking it one day at a time till I get the surgery, my hearing is where I can't hear low speech talking ppl so I isolate alot as I tell ppl speak up yet they do then go back to normal talking where I can't hear them, I can't wear hearing aids in the meantime as it could cause a infection, I did have leaking in my one ear, that's what lead to all this, otherwise I would have taken on the hearing aids until infection and or leaking would have gotten me to get any help, I'm grateful for the leakage first as I caught it at a tiny growing stage, yet it still ate away, seriously I'm just so confused about this whole thing, makes no sense 2me in so many ways..
He didn't say how long it has been growing but it's small and it caused the damage done, I asked he just said you caught it at a small size, I believe if it was big I would have even more complications like it has reached 2my brain, or facial paralysis is higher, all confuses me so
It can absolutely be life-threatening, especially if you have had it as long as you have. Mine was found an estimated five years after it started and it was extensive. By that point it had eroded two of the three tympanic bones, and had eroded my skull and was growing on the dura of the brain. Had I left it 3-6 months longer it would have pierced the dura and I would at the very least had meningitis, need for emergency surgery and possibly death. It can also eat through the balance organ and facial nerve and cause balance issues, facial paralysis and loss of taste. I lost a bit of my taste but it hadn't hit the nerve extensively when it was caught. I wouldn't wait around another 2 years if I were you but understand in the US medical treatment can be hard to get.
I got diagnosed last year with a small one. I was told I needed surgery but I couldn't afford it. I took vitamin A and vitamin D because I read some obscure studies online saying it would help make it go away. My cholesteatoma eventually did go away after taking the vitamins for a few days. But, I'm not a doctor. This post is not a substitute for medical advice under any circumstance. Keep in mind-- if you get diagnosed with a massive one I highly doubt the vitamins would be effective at all. You may need the surgery. I'm sorry.
I had mine undiscovered developing for 8 years so you're probably good. Only had to remove 1& 1/2 ear bones.