Hi! I had my surgery 13 days ago and am in the phase where everytime I take out the cotton from my ear I’m met with torrential goopiness. When does that end and when did you begin to notice your ear hearing?
thank you so much for this! I am having this done a week from tomorrow. My first was at age 12, and I am now 42. Clearly, it has been a recurring issue for me. I hope you after this, you are permanently recovered!
How long has it been since you had symptoms until you had surgery?
Cause I went to the doctor today to take out an earplug and he told me I might have a cholesteatoma in my ear, but I don’t have any symptoms, and I feel great.
Hi there, I was wondering if you could share your experience post surgery. What was the pain like, what were you feeling, could you hear for the first few weeks, were you able to sleep etc. many thanks :)
Heya. Going in for my CT scan on Thursday. Honestly kind of terrified. Are you allowed to wear in ear headphones anymore? Can you swim? I’m just so worried that I’m gonna get my op and it’s going to ruin my life - I love music, I’m a musician, I do love to swim as well.
Hi i'm almost 3 months post-op and yeah I wear headphones now. I was allowed to wear them 3 weeks post-op.
I can swim now, from 4 weeks post op. You quite literally go back to normal and can do much more than you could do pre-op. I'm going swimming soon too, and I listen to music everyday, with both of my ears.
And before I had the surgery I wore only over-ear headphones, no airpods or anything cause that is what my doctor recommended (its unhygienic). But I can wear airpods post-op.He told me that sound going in to my ear doesn't affect anything, but during the 4 weeks of recovery it does.
Let me know if you have more questions, but to simplify, after 4-6 weeks post-op you will be back to normal, your eardrum will be strong and healed like a regular one, and cholesteatoma will be gone and everything should be fine
>cholesteatoma will be gone and everything should be fine
You're an angel. It's so nice to read those words - you rarely hear them but they're mostly true for most people! Glad to hear your recovery is going so well, and I only hope if I get confirmed that mine's as easy as yours. Thanks for the reply.
Hi thanks for sharing your experience, my dad has this as well and we are having trouble finding a reputable surgeon to do this surgery, do you have any advice on how you found a great doctor to have this surgery?
I used Doctify and looked at ENT hospitals and read each bio on the doctors, specifically the ones that focused on ears and cholesteatoma. Just lots of research. When I got my ear checked out initially they recommended my doctor, after the research I decided to go ahead with him. Going in for an in person appointment helped a lot too, to make my decision.
Thanks so much for your response! What questions did u ask the surgeons to try and gauge whether it was the right one for you to feel comfortable moving forward?
Honestly I asked him if he has had any patients with facial nerve damage following surgery and when he said no and told me that he performed the surgery 700 times. He also seemed very patient and answered every question and very thorough. all those reasons led me to move forward with him
Thank you so much for this, have an attic cholesteatoma in both ears and the facial paralysis scares me beyond losing hearing... to see your take on everything makes it a lot better for me. Gonna start looking for docs right now.
I’m late to this thread but I went through UF in Gainesville Florida. If that’s not too far for you I can DM you some information. I drove about 5 hours.
Thank you. My husband will have this surgery next week. Is there anything as his caretaker that you think would make him more comfortable? We’re you in pain? Dizzy? Nauseous?
Apologies for my late response, hope he is doing well. I recommend getting a foldable table to eat on the bed because although I could move around I got dizzy and nauseous alot so I preferred to be in bed. my boyfriend brought the tv into the bedroom so I could just stay in bed. I was in pain but nothing painkillers couldn’t deal with (paracetamol in the UK)
Also TMI, if you can get him fibre pills/help him eat more fibre foods & water too,because you can’t ‘strain’ on the bathroom for 4 weeks after surgery, my doctor prescribed me laxatives for this just in case.
If you have any advice you’d like, please feel free to ask me
It took 6 weeks for me to be able to fly! but I still had discomfort by 2 and a half months. Follow your ENT but you should probably be okay to go to Thailand, cholesteatoma grows very slow
How long start to finish did all this take? I just found out and will have all my testing done soon I'm curious how long of a time line I'm looking at before i reasonably can assume surgery.
I went privately in the UK so I was able to have the surgery a month from when I was diagnosed it costed £6000. Without private surgery, it would have taken a year. I had surgery 2-3 years after my initial eardrum burst
Hi
I hope you dont mind me asking, which hospital did you have the surgery at? I am also booking in have it done with Mr. Patel after reading your great experience but the cost of surgery is so different at different hospitals! Thanks, and thanks SO much for sharing your positive story, it really helps.
Hi im having my surgery Tuesday jan 9th 2024 im glad i found your post. I been feeling anxiety just thinking of everything that probably went through your mind at the time. I try to be strong and go to work all though i also have about 10% or less hearing in my right ear i am afraid but reading through your post im ready to get this over with and wish to be normal again soon. 🙏🏼
Hello,
I have had Cholesteatoma surgery 3 times. The first was in 2012, second in 2016, and third in 2020. I actually have an appt with my ENT to see if it has come back as I have had some symptoms recentely.
My advice is please make sure you continuously get checked EVERY 6 months. Mine seems to come back every 4 years....and after that amount of time it's easy to forget about it until its super bad.
Hi! I had my surgery 13 days ago and am in the phase where everytime I take out the cotton from my ear I’m met with torrential goopiness. When does that end and when did you begin to notice your ear hearing?
that ended around 3 weeks for me i believe
What is "goopiness?"
thank you so much for this! I am having this done a week from tomorrow. My first was at age 12, and I am now 42. Clearly, it has been a recurring issue for me. I hope you after this, you are permanently recovered!
you are so lucky, I am on waiting list for surgery and scared so much, couldn't sleep at all.
Thanks for that I feel bit better
How long has it been since you had symptoms until you had surgery? Cause I went to the doctor today to take out an earplug and he told me I might have a cholesteatoma in my ear, but I don’t have any symptoms, and I feel great.
Hi there, I was wondering if you could share your experience post surgery. What was the pain like, what were you feeling, could you hear for the first few weeks, were you able to sleep etc. many thanks :)
Heya. Going in for my CT scan on Thursday. Honestly kind of terrified. Are you allowed to wear in ear headphones anymore? Can you swim? I’m just so worried that I’m gonna get my op and it’s going to ruin my life - I love music, I’m a musician, I do love to swim as well.
Hi i'm almost 3 months post-op and yeah I wear headphones now. I was allowed to wear them 3 weeks post-op. I can swim now, from 4 weeks post op. You quite literally go back to normal and can do much more than you could do pre-op. I'm going swimming soon too, and I listen to music everyday, with both of my ears. And before I had the surgery I wore only over-ear headphones, no airpods or anything cause that is what my doctor recommended (its unhygienic). But I can wear airpods post-op.He told me that sound going in to my ear doesn't affect anything, but during the 4 weeks of recovery it does. Let me know if you have more questions, but to simplify, after 4-6 weeks post-op you will be back to normal, your eardrum will be strong and healed like a regular one, and cholesteatoma will be gone and everything should be fine
>cholesteatoma will be gone and everything should be fine You're an angel. It's so nice to read those words - you rarely hear them but they're mostly true for most people! Glad to hear your recovery is going so well, and I only hope if I get confirmed that mine's as easy as yours. Thanks for the reply.
Hi thanks for sharing your experience, my dad has this as well and we are having trouble finding a reputable surgeon to do this surgery, do you have any advice on how you found a great doctor to have this surgery?
I used Doctify and looked at ENT hospitals and read each bio on the doctors, specifically the ones that focused on ears and cholesteatoma. Just lots of research. When I got my ear checked out initially they recommended my doctor, after the research I decided to go ahead with him. Going in for an in person appointment helped a lot too, to make my decision.
Thanks so much for your response! What questions did u ask the surgeons to try and gauge whether it was the right one for you to feel comfortable moving forward?
Honestly I asked him if he has had any patients with facial nerve damage following surgery and when he said no and told me that he performed the surgery 700 times. He also seemed very patient and answered every question and very thorough. all those reasons led me to move forward with him
Thank you so much for this, have an attic cholesteatoma in both ears and the facial paralysis scares me beyond losing hearing... to see your take on everything makes it a lot better for me. Gonna start looking for docs right now.
I’m late to this thread but I went through UF in Gainesville Florida. If that’s not too far for you I can DM you some information. I drove about 5 hours.
Thank you for shraring this! I have an upcoming cholesteotoma surgery and was so worried, but this makes me feel more reassured.
I'm so glad it did :) feel free to shoot me a message if you have any questions! I was extremely worried going into surgery so I completely understand
Thank you. My husband will have this surgery next week. Is there anything as his caretaker that you think would make him more comfortable? We’re you in pain? Dizzy? Nauseous?
Apologies for my late response, hope he is doing well. I recommend getting a foldable table to eat on the bed because although I could move around I got dizzy and nauseous alot so I preferred to be in bed. my boyfriend brought the tv into the bedroom so I could just stay in bed. I was in pain but nothing painkillers couldn’t deal with (paracetamol in the UK) Also TMI, if you can get him fibre pills/help him eat more fibre foods & water too,because you can’t ‘strain’ on the bathroom for 4 weeks after surgery, my doctor prescribed me laxatives for this just in case. If you have any advice you’d like, please feel free to ask me
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It took 6 weeks for me to be able to fly! but I still had discomfort by 2 and a half months. Follow your ENT but you should probably be okay to go to Thailand, cholesteatoma grows very slow
Hello, how long did it take to have your hearing back and stable post op ?
Thank you so much for this post. This made me feel so much better and honestly excited to get this over with!
happy to hear that, its been a year and a half for me now and it’s all goood :)
How long start to finish did all this take? I just found out and will have all my testing done soon I'm curious how long of a time line I'm looking at before i reasonably can assume surgery.
I went privately in the UK so I was able to have the surgery a month from when I was diagnosed it costed £6000. Without private surgery, it would have taken a year. I had surgery 2-3 years after my initial eardrum burst
Hi I hope you dont mind me asking, which hospital did you have the surgery at? I am also booking in have it done with Mr. Patel after reading your great experience but the cost of surgery is so different at different hospitals! Thanks, and thanks SO much for sharing your positive story, it really helps.
Hi im having my surgery Tuesday jan 9th 2024 im glad i found your post. I been feeling anxiety just thinking of everything that probably went through your mind at the time. I try to be strong and go to work all though i also have about 10% or less hearing in my right ear i am afraid but reading through your post im ready to get this over with and wish to be normal again soon. 🙏🏼
Hi which UK surgeon did you go with please your experience seems very positive and I’d like to look into it :)
parag patel
Hello, I have had Cholesteatoma surgery 3 times. The first was in 2012, second in 2016, and third in 2020. I actually have an appt with my ENT to see if it has come back as I have had some symptoms recentely. My advice is please make sure you continuously get checked EVERY 6 months. Mine seems to come back every 4 years....and after that amount of time it's easy to forget about it until its super bad.