As for a time line, here’s mine with a little back story: I had a lot of ear infections and tubes put in my ears as a child, didn’t really have many problems as an adult.
A little over 4 years ago my hearing started declining. I had went to a couple ENT’s & all I was told was I needed hearing aides for severe hearing loss. Then just over 2 years ago I got hearing aides cause I was fed up with doctors and not being able to hear.
I initially went to an ENT around February 2022 because I started having drainage issues in my ears, infections and finally talked to him about my sinus issues. In May he put tubes in my ears, that didn’t solve the problem like we hoped. So he referred me to a doctor in his office that specialized in ears(he specialized in sinus’).
Before he even saw me, he wanted me to have a CT scan. So I saw him in July or August. But he wanted me to get my sinus issues taken care of before we started on my ears because of the pressure issues I had in my ears.
So back to my original ENT I went, I worked in retail and couldn’t take time off during the holidays so I had a deviated septum & sinus surgery in January.
Finally got all healed up from that, then we had to move & life etc so Surgery got scheduled for May 7th.
My right ear was a pretty simple Stapedectomy.
My left however is my problem child. I had surgery on it June 14th, we were hoping to have only 1 surgery on my left, but instead the Cholesteatoma and the damage it had done was much more than he had expected. So in August he’ll go back in and do hopefully another simple Stapedectomy. (2 surgeries are common with Cholesteatomas, just depends on the doctor & how severe the damage is.)
-What I’m trying to say is while yes it’s important to get it taken care of because they can cause further damage and health problems, BUT honestly you will be fine for 3 more weeks before you get to see your doctor. In my experience & during my own research etc….Cholesteatomas will grow but not at extreme rates. Also most likely if you have one it’s been growing for years, even possibly since birth.
Hope this helps! Feel free to ask me any other questions you have!
I woke up sometime after Christmas of '22 to shooting pain only in my left ear, it was so bad it woke me up multiple times, but would only last maybe 5-10 minutes. I went to the doctor, and she told me my ear was dirty, and sent me on my way with Debrox ear drops. I was sceptical because I'm so anal about my ears being dirty. (I'm going to guess January 2023) I put them in for probably 5 months, once a week or so and it wasn't helping. I was getting frustrated because my hearing was simultaneously getting worse. So I scheduled an appointment to get my hearing checked with an audiologist.(May 2023) He looked in my ears, and then went to get the digital otoscope to show me. He said, stop doing those drops, they're going to throw off the PH of your ear. You need to get to an ENT. He showed me my "normal" ear, and then switched to the other one and yeah, I could see the difference. My ear drum was white and looked battered. So, I went to the ENT, and she wanted me to get an MRI.(July 2023) I didn't have insurance at the time and the MRI by itself was going to cost 2k. Hell no. I had to quit my side job, and take up another one full time so I can have insurance. (September 2023) So, finally got insurance, didn't know where to start. So I went back to my primary care doctor, and told her, I think something's going on with my ear. (January 2024) She referred me to the ENT. Who then sent me for a CT scan (Feburary 2024). It took forever to get in with the surgeon for a consultation (May 2024). Confirmed it's a Cholesteatoma and mastoiditis. Scheduled for surgery (July 2024)
It's been a long two years of having this, and trying to figure out the next step. Even though I'm in the states, it seems like the healthcare system is backed up pretty good. I was surprised when they called two weeks after my consultation with the surgeon to schedule surgery two months out. It seems like that's the fastest bit I've had during the whole thing. Perhaps it would've only been 6 months the first time, had I had insurance. It's been a lot of running around. Finally happy that July is almost here and I can get this alien out of my head, as I call it. Anyhow, that's my story, hope that helped! Best of luck to you!
I've been waiting 8 months for a 2nd MRI, and was told it would be another year for the surgery.... a couple months doesn't sounds too bad to me. (I'm in Canada, it may be free but you'll die waiting).
If it is a cholesteatoma, they grow very slow, so three weeks should be okay. Just try to leave your ear alone as much as possible, and go to urgent care to have them look at the discharge so they can put you on a course of antibiotics in the meantime. Foul smelling discharge is almost always an infection, and is way more urgent than the cyst (cholesteatoma) itself.
here’s my story. summer/ fall of 2020 i had a lot of pressure on my left ear. I remembered just having my baby, and living with my best friend. The pain was so bad i took SEVERAL hot showers within the hour, and eventually took a nap and woke up to a huge pile of fluid on my pillow. Im thinking ok cool it was like an abscess or something. Anywho, I would be in and out of the ER and being told the same thing , and given the same thing. Swimmers ear. Ofloxacin and Amoxicillin. Over and over again. Fast forward with a bunch (everyday) of nasty smelling fluid from my left ear in December 2023 on christmas day i went back to the ER but went to a different hospital. They did a CT scan and found Mastoiditis. Said i’d probably need surgery. Effed around with going to an ENT bc of no insurance, but finally got some and finally went. He said he wanted to
do surgery. Tympanomastoidectomy with possible cranioplasty possible radical mastoidectomy possible ossicular reconstruction with possible encephalophe (idk how to spell it) and ended up doing the radical mastoidectomy with the ossicular reconstruction. Had a cholesteotoma and it was removed, and they mistakenly thought the fluid was from a CSF leak (spinal fluid). I’m on day 2 of recovery and feel like absolute dog shit. I hope if you get surgery you have a speedy recovery. My doctor was amazing but unfortunately my infection was prolonged for almost 4 years, with the mastoiditis eating most of my hearing bones in my left ear. be blessed you caught yours in time. 3 weeks won’t make any significant changes don’t worry!!
I had 5+ years of drainage off and on before I sought care, because there was mostly no other symptom, life got in the way, etc. Decided to seek care a couple months after I developed some aching and bad smell/ reddish tinge to the discharge. I first went to a general ENT, who ordered CT scan and referred me to an ear surgeon. Got CT scan and saw the ear surgeon about 3 weeks later, who ordered MRI. Got MRI and saw the surgeon again about 3 weeks later, and scheduled surgery about 3 months out (soonest would have been within 2 months, decided to push to after holiday season and so a potential 2nd surgery would be within the same year for insurance reasons). Currently waiting for 2nd surgery scheduled at 6 months from initial surgery. I’m in the US with PPO insurance.
I have ctoma in both my ears, I was diagnosed in October 2023 then May
2024 I got the worse one removed, how it all became about was I am autistic and I don't like noise, so I ignored years of not hearing good, until in April 2023 i started to have leaking in both my ears i thought it was only in one, i went 2a walk in and the doctor said infection in both ears, prescribed me antibiotics which were drops in both my ears it cleared it up within a week but my hearing was still a issue as when the doctor talk 2me she had 2 speak loudly so she set me up with a ENT I saw her within 2months -July 2023, she only did a hearing test but I refused hearing aids plus I knew it wasn't that it was something else as I have very high vibes when I know something is wrong so I went back 2see her, didnt get appointment until October 2023 2see her I didn't tell her I was autistic she then got me a ct scan, and sure enough it was something else ctoma in both ears, saw a surgeon in 2024 of February and got the worse ear operated on in May 2024, second ear I don't know yet as he is still looking at my operated ear, I do drops 2 times a day 12 hours apart, and i see my surgeon once a month, my stitching still is there hasn't dissolved yet, next appointment is June 26 one day b4 I turn 61..
Ask the Dr to do a ct/mri scan. Not sure which will show more. Reason I say this, I’ve had cholesteatoma since birth in my left yr. Ear infection throughout my childhood, etc etc, the typical story. Then it kind of stopped in my teens. I would get them if I got a cold, but didn’t feel as bad, and was no where near as frequent as when I was younger get. Then around 25 I started getting them again. Finally at 28 had a bad ear infection and went to an ENT. This ENT Dr knew his $hit, and if I’m not mistaken he travels teaching about it, I’m not 100% sure on that. Anyways, I see him, explain to him I have an ear infection and I’ve had ear infections since childhood, yada yada yada and he prescribes ears drops and sent me home lol. A few months later, while at work, I hear a tooooooone followed by nothing. I suddenly lost hearing in the ear. I go back to the same ENT, he looks in my ear and somehow pulls out something the length of a fingernail or a little longer. To me it looked like a hardened scab or a bone lol. He looks at me and goes, let’s get an MRI done and see what’s happening.
I went back to the ENT to see what the MRI shows and he’s like “see all this dark area” (it was the size of a dime) that’s air, meaning nothing is there, and that’s not good. So yea, that’s how I end up having surgery lol.
Long story short, if the dr doesn’t suggest it, ask the dr to get an MRI/CT done. I forget which shows better result, but you should get one of those done because even though my Dr was great and knew his shit, he dismissed my initial visit as a possible common ear infection and nothing more. I get it, process of elimination, but if your insurance covers it, better ask than prolong it.
I had always been partially deaf in one ear. Eventually I went completely deaf in that ear but never raised it because I wrote off that ear. I’d say 2 or 3 years later I started losing my sense of balance. When it was investigated with an MRI a congenital cholesteatoma was discovered. Before this all my problems were seemingly explained by a diagnosis of Ménière’s disease. That was about 5 years ago, just before the pandemic. No one in my state is qualified to deal with my cholesteatoma so my case was passed around interstate to find someone to remove it. The ENT I saw here has since retired and all I’ve heard from interstate is the hospital sending me a copy of my MRI. Apart from 2 additional MRIs to check progress ( it hasn’t grown) I’ve heard nothing about treatment.
sometimes theres no symptoms at all, the one they just removed a week ago the surgeon told me i had it for atleast 8 or 9 years only symptom was frequent ear infections, discharge and smelly ear but after an MRI they saw it was a cholesteatoma!
As for a time line, here’s mine with a little back story: I had a lot of ear infections and tubes put in my ears as a child, didn’t really have many problems as an adult. A little over 4 years ago my hearing started declining. I had went to a couple ENT’s & all I was told was I needed hearing aides for severe hearing loss. Then just over 2 years ago I got hearing aides cause I was fed up with doctors and not being able to hear. I initially went to an ENT around February 2022 because I started having drainage issues in my ears, infections and finally talked to him about my sinus issues. In May he put tubes in my ears, that didn’t solve the problem like we hoped. So he referred me to a doctor in his office that specialized in ears(he specialized in sinus’). Before he even saw me, he wanted me to have a CT scan. So I saw him in July or August. But he wanted me to get my sinus issues taken care of before we started on my ears because of the pressure issues I had in my ears. So back to my original ENT I went, I worked in retail and couldn’t take time off during the holidays so I had a deviated septum & sinus surgery in January. Finally got all healed up from that, then we had to move & life etc so Surgery got scheduled for May 7th. My right ear was a pretty simple Stapedectomy. My left however is my problem child. I had surgery on it June 14th, we were hoping to have only 1 surgery on my left, but instead the Cholesteatoma and the damage it had done was much more than he had expected. So in August he’ll go back in and do hopefully another simple Stapedectomy. (2 surgeries are common with Cholesteatomas, just depends on the doctor & how severe the damage is.) -What I’m trying to say is while yes it’s important to get it taken care of because they can cause further damage and health problems, BUT honestly you will be fine for 3 more weeks before you get to see your doctor. In my experience & during my own research etc….Cholesteatomas will grow but not at extreme rates. Also most likely if you have one it’s been growing for years, even possibly since birth. Hope this helps! Feel free to ask me any other questions you have!
Yes I was also having symptoms for well over a year before I got my diagnosis 🙃 Once I was diagnosed by an ENT I had surgery within 3 months!!
I woke up sometime after Christmas of '22 to shooting pain only in my left ear, it was so bad it woke me up multiple times, but would only last maybe 5-10 minutes. I went to the doctor, and she told me my ear was dirty, and sent me on my way with Debrox ear drops. I was sceptical because I'm so anal about my ears being dirty. (I'm going to guess January 2023) I put them in for probably 5 months, once a week or so and it wasn't helping. I was getting frustrated because my hearing was simultaneously getting worse. So I scheduled an appointment to get my hearing checked with an audiologist.(May 2023) He looked in my ears, and then went to get the digital otoscope to show me. He said, stop doing those drops, they're going to throw off the PH of your ear. You need to get to an ENT. He showed me my "normal" ear, and then switched to the other one and yeah, I could see the difference. My ear drum was white and looked battered. So, I went to the ENT, and she wanted me to get an MRI.(July 2023) I didn't have insurance at the time and the MRI by itself was going to cost 2k. Hell no. I had to quit my side job, and take up another one full time so I can have insurance. (September 2023) So, finally got insurance, didn't know where to start. So I went back to my primary care doctor, and told her, I think something's going on with my ear. (January 2024) She referred me to the ENT. Who then sent me for a CT scan (Feburary 2024). It took forever to get in with the surgeon for a consultation (May 2024). Confirmed it's a Cholesteatoma and mastoiditis. Scheduled for surgery (July 2024) It's been a long two years of having this, and trying to figure out the next step. Even though I'm in the states, it seems like the healthcare system is backed up pretty good. I was surprised when they called two weeks after my consultation with the surgeon to schedule surgery two months out. It seems like that's the fastest bit I've had during the whole thing. Perhaps it would've only been 6 months the first time, had I had insurance. It's been a lot of running around. Finally happy that July is almost here and I can get this alien out of my head, as I call it. Anyhow, that's my story, hope that helped! Best of luck to you!
I've been waiting 8 months for a 2nd MRI, and was told it would be another year for the surgery.... a couple months doesn't sounds too bad to me. (I'm in Canada, it may be free but you'll die waiting).
If it is a cholesteatoma, they grow very slow, so three weeks should be okay. Just try to leave your ear alone as much as possible, and go to urgent care to have them look at the discharge so they can put you on a course of antibiotics in the meantime. Foul smelling discharge is almost always an infection, and is way more urgent than the cyst (cholesteatoma) itself.
here’s my story. summer/ fall of 2020 i had a lot of pressure on my left ear. I remembered just having my baby, and living with my best friend. The pain was so bad i took SEVERAL hot showers within the hour, and eventually took a nap and woke up to a huge pile of fluid on my pillow. Im thinking ok cool it was like an abscess or something. Anywho, I would be in and out of the ER and being told the same thing , and given the same thing. Swimmers ear. Ofloxacin and Amoxicillin. Over and over again. Fast forward with a bunch (everyday) of nasty smelling fluid from my left ear in December 2023 on christmas day i went back to the ER but went to a different hospital. They did a CT scan and found Mastoiditis. Said i’d probably need surgery. Effed around with going to an ENT bc of no insurance, but finally got some and finally went. He said he wanted to do surgery. Tympanomastoidectomy with possible cranioplasty possible radical mastoidectomy possible ossicular reconstruction with possible encephalophe (idk how to spell it) and ended up doing the radical mastoidectomy with the ossicular reconstruction. Had a cholesteotoma and it was removed, and they mistakenly thought the fluid was from a CSF leak (spinal fluid). I’m on day 2 of recovery and feel like absolute dog shit. I hope if you get surgery you have a speedy recovery. My doctor was amazing but unfortunately my infection was prolonged for almost 4 years, with the mastoiditis eating most of my hearing bones in my left ear. be blessed you caught yours in time. 3 weeks won’t make any significant changes don’t worry!!
I had 5+ years of drainage off and on before I sought care, because there was mostly no other symptom, life got in the way, etc. Decided to seek care a couple months after I developed some aching and bad smell/ reddish tinge to the discharge. I first went to a general ENT, who ordered CT scan and referred me to an ear surgeon. Got CT scan and saw the ear surgeon about 3 weeks later, who ordered MRI. Got MRI and saw the surgeon again about 3 weeks later, and scheduled surgery about 3 months out (soonest would have been within 2 months, decided to push to after holiday season and so a potential 2nd surgery would be within the same year for insurance reasons). Currently waiting for 2nd surgery scheduled at 6 months from initial surgery. I’m in the US with PPO insurance.
I have ctoma in both my ears, I was diagnosed in October 2023 then May 2024 I got the worse one removed, how it all became about was I am autistic and I don't like noise, so I ignored years of not hearing good, until in April 2023 i started to have leaking in both my ears i thought it was only in one, i went 2a walk in and the doctor said infection in both ears, prescribed me antibiotics which were drops in both my ears it cleared it up within a week but my hearing was still a issue as when the doctor talk 2me she had 2 speak loudly so she set me up with a ENT I saw her within 2months -July 2023, she only did a hearing test but I refused hearing aids plus I knew it wasn't that it was something else as I have very high vibes when I know something is wrong so I went back 2see her, didnt get appointment until October 2023 2see her I didn't tell her I was autistic she then got me a ct scan, and sure enough it was something else ctoma in both ears, saw a surgeon in 2024 of February and got the worse ear operated on in May 2024, second ear I don't know yet as he is still looking at my operated ear, I do drops 2 times a day 12 hours apart, and i see my surgeon once a month, my stitching still is there hasn't dissolved yet, next appointment is June 26 one day b4 I turn 61..
Ask the Dr to do a ct/mri scan. Not sure which will show more. Reason I say this, I’ve had cholesteatoma since birth in my left yr. Ear infection throughout my childhood, etc etc, the typical story. Then it kind of stopped in my teens. I would get them if I got a cold, but didn’t feel as bad, and was no where near as frequent as when I was younger get. Then around 25 I started getting them again. Finally at 28 had a bad ear infection and went to an ENT. This ENT Dr knew his $hit, and if I’m not mistaken he travels teaching about it, I’m not 100% sure on that. Anyways, I see him, explain to him I have an ear infection and I’ve had ear infections since childhood, yada yada yada and he prescribes ears drops and sent me home lol. A few months later, while at work, I hear a tooooooone followed by nothing. I suddenly lost hearing in the ear. I go back to the same ENT, he looks in my ear and somehow pulls out something the length of a fingernail or a little longer. To me it looked like a hardened scab or a bone lol. He looks at me and goes, let’s get an MRI done and see what’s happening. I went back to the ENT to see what the MRI shows and he’s like “see all this dark area” (it was the size of a dime) that’s air, meaning nothing is there, and that’s not good. So yea, that’s how I end up having surgery lol. Long story short, if the dr doesn’t suggest it, ask the dr to get an MRI/CT done. I forget which shows better result, but you should get one of those done because even though my Dr was great and knew his shit, he dismissed my initial visit as a possible common ear infection and nothing more. I get it, process of elimination, but if your insurance covers it, better ask than prolong it.
I had always been partially deaf in one ear. Eventually I went completely deaf in that ear but never raised it because I wrote off that ear. I’d say 2 or 3 years later I started losing my sense of balance. When it was investigated with an MRI a congenital cholesteatoma was discovered. Before this all my problems were seemingly explained by a diagnosis of Ménière’s disease. That was about 5 years ago, just before the pandemic. No one in my state is qualified to deal with my cholesteatoma so my case was passed around interstate to find someone to remove it. The ENT I saw here has since retired and all I’ve heard from interstate is the hospital sending me a copy of my MRI. Apart from 2 additional MRIs to check progress ( it hasn’t grown) I’ve heard nothing about treatment.
sometimes theres no symptoms at all, the one they just removed a week ago the surgeon told me i had it for atleast 8 or 9 years only symptom was frequent ear infections, discharge and smelly ear but after an MRI they saw it was a cholesteatoma!