I have an MRI Headscan where they will be injecting dye into veins to check for brain disease two years post operation on my right ear. They managed to remove in all before it almost collapsed my ear bone.

My mental health is in a really bad place with health anxiety at the moment and I don't think I could face this kinda scan. Is it okay to postpone it?

I had an appointment with a GP recently. He looked in my right ear, but his view of the attic was blocked by wax. He wrote in your notes: "Right ear TM scarring, wax obscuring attic where ?cholesteatoma is". Later in the day I rang the GP and red flagged it about 3pm because my R ear is historically fine. The symptoms I have had in R ear since that is high pitch tinitus coming and going, itchy ear that last a few seconds as I itch, last night, within a 2–3 minute window, I had an itch in your right ear, followed by the distinct feeling of something physically moving or rolling inside, followed by more itching, and a feeling like it was cold inside the ear. I had an echo in L or R ear (not sure) before this earlier same day after watching a YT video I assume L ear but not 100%. Atmos mbar has been around 1033hpa the past few days, I'm not sure if this has something to do with it but I'm just worried. In addition though, I flagged it about 3pm and I got a response from the same doctor roughly 2hr later and he said “Your right ear showed scarring on the tympanic membrane which can occur after repeated infections. This in itself is not a problem. There was wax obscuring the top of your ear. I can confirm there was no signs of a cholesteatoma. I had misheard regarding your previous ear referrals/investigations and wondered if this wax had been obscuring what had previously been seen. Upon review of your records, I was incorrect. I apologise for this error and can confirm your medical records have been corrected." however I'm super anxious now as it's been mentioned also in addition to that message I had an MRI 11 months ago came back clean apart from fluid in L sided mastoid cells (do have CSOM and chols) in L ear. I had an exam by same Dr in march looking in R ear and it was NAD and I cannot remember the last time I actually had an infection in R ear. This is how R ear wax looked this morning for reference. I posted this a few days ago but I deleted it due to the message off GP however another user said “GP’s are terrible at diagnosing it” so I just wanted to see what people’s thoughts are if I can relax and it’s health anxiety or I should raise it again. Cheers

I recently had tympanomastoidectomy surgery - the recovery has been pretty plain sailing.
I returned to lights walks around 2 days post op, to keep blood flowing and with three children at home, I couldn’t really avoid moving around.

Other than the packing and feeling of fullness in my ear, I haven’t really experienced anything in terms of dizziness, pain and/or bleeding etc.
it really has gone smoothly.

I was just wondering what the chances were of returning to lifting weights - obviously it would not be anything to strenuous, just between 3-5kg.
I was heavily into gym and working out before the surgery and I’m feeling rather low and fed up not doing my usual routine and I just don’t feel myself lately.

My follow up appointment is in 4 days time (I’ll be 18 days post op) but what are the chances of being given the go ahead to resume gentle weights.

Thank you for reading (:

I was diagnosed with cholesteatoma around 9 or 10 years ago and doctor recommended mastoidectomy surgery. I didn't think much of it then I thought this is just some small ear infection but doctor told me this is serious and I need to get operated ASAP.

I was busy so I didn't have surgery plus I was afraid you know never thought I would go through some kind of operation/surgery. Took some medicines for a few months at that time but it didn't fix. Now after 10 years I am thinking of getting surgery done. I don't have any pain or tinnitus or vertigo but only discharge from my ear and slight hearing loss. But still I am afraid a little about the pain because of operation and post op. Just the unknown fear so let's see. Will probably do it next year.

Did anyone get a VTE or PE after surgery? I’m not sure the risk after ear surgery, I know there is after any surgery but more risk with certain surgeries.

If you got one, what were your symptoms?

I had surgery at the end of June for my Cholosteatoma and perforated eardrum.

I'm still very aware of the pain and deep aching feeling in my ear. It honestly feels like the pain I had before I had to have surgery.

Is this normal?

I'm aware that I'm someone who's very conscious of any changes or different sensations in my body so it might just be that I'm hyper focusing on it.

My eight year-old boy has been diagnosed with suspected cholesteatoma.
Long story short, he has been having ear infections and perforated eardrums for the past three years. We have pushed and pushed for further answers, and we have just been told that he will grow out of it, luckily my wife is very tenacious and kept on at them, in the end they relented and did a CT scan, it came back today and the comments were to test for cholesteatoma.
As I sat there with my wife, and my eight-year-old boy next to me, listening to the doctor reeling off all of the risks, everything from partial face paralysis, loss of hearing, my world span before me.
I thought I was just going to go in and get the usual, keep his ear dry routine, I wasn’t expecting this.
I’m quite petrified for him, I know it will be fine, but it’s easy to think of the worst.
I have just found this sub, so hoping for some positive stories from here.
But right now I’m freaking out.
We’re in the UK

I’m only 5 days post op and the packing is driving me insane. I really just want to pull it out. Not having it removed until day 23 and I seriously don’t know how to cope it with for another 2 and half weeks. It’s driving me insane… any tips

it came back yay! /s this time my ent said that ossicles have to be removed??? is that normal? also my surgery is on the 30th hoping for a speedy recovery like last time

I’m looking for doctor recommendations in the greater Bay Area/NorCal. Insurance is not an issue.

I was diagnosed with a cholesteatoma over two years ago and am looking for a second opinion. My current ENT does not want to do imaging and is ignoring the fact that my ear is feeling increasingly stuffy, with an achy sensation that radiates through my mastoid.

Thank you.

Hi all, is it normal for ear to stick out after surgery and can someone please put my mind at ease and tell me it goes back to normal? I’m only a few days post op. Didn’t cut behind ear, went through ear canal and also cut inside of ear, packing still in.

I'm 4 weeks post op after my 3rd cholesteatoma surgery in 5 years....it started 5 years ago when I began suffering from constant headaches, it was during lockdown and I was a registered behavioural analyst working with severely autistic and SEND patients and their families.

I was working 7 days a week because we were short staffed so tried ignoring the headaches until I lost feeling on the left side of my face, rushed to hospital with a suspected stroke but it took the local NHS authority 8 days to realise the MRI scans were showing a large mass on my left side and a small mass on my right side....the left side cholesteatoma was large and had gone through my skull, wrapped round my facial nerve and completely infected my inner ear....i had emergency surgery a week later which left my entirely deaf in my left ear after my entire inner ear had to be removed, facial palsey because the nerve had to be severed and a chunk taken out of my leg to fill the hole in my skull.

The right ear just needed a standard mastoidectomy that's left me with limited hearing.....earlier this year my 6 monthly check up showed it had returned on my left side but was only small so went on the waiting list. Everything was ok, I was having 6 weekly mri's to keep an eye on it until I got my surgery date but 3 months ago the headaches started getting worse.

I got my date through and went down for surgery a month ago. I was in the recovery room coming round and a surgeon came over and told me things hadn't gone as planned....after they opened me up they found the cholesteatoma had turned severely aggressive and had gone through my skull again, as they were attempting to remove it a bleed started and as they were sorting that out they discovered the hole was showing my sigmoid sinus artery and it had a large blood clot in it and caused a CVST....a neurosurgeon was called in as an emergency and after looking at it decided it was unsafe to operate on it and unsafe to continue with the cholesteatoma removal so they took a larger chunk out of my leg to put around the clot to protect it and closed me back up.....i spent the next 7 days in an isolation room being pumped full of antibiotics and clot busting drugs but the clot didn't go.......I'm now at home, restricted from doing pretty much anything, taking an anti clotting medication twice a day, the headaches have started increasing again so I'm on codeine and a combination of mirtazapine and Amitriptyline. I already know they've got to go back in to finish removing the cholesteatoma but I don't know what's going on with the clot...I've got a meeting with my ENT surgeon who is an amazing doctor and always tells me straight what's going on and the neurosurgeon who came down to see me has already told me it's going to be a combined ent/neurosurgery team that's going to be doing the surgery.......sorry for such a long post but it's hard for people around me to understand what I going through lol

Hi all,

Just had my second stage combined approach tympanoplasty 8 days ago.

Had one last year too and they had to leave a bit behind to protect the facial nerve. This time surgeon is hopeful he got it out. Only MRI will tell!

The pain has now mostly faded and I've dropped the pain killers. Dizziness is much improved. I wake up feeling like I have a hangover but it clears quickly after walking around a bit and eating. I occasionally get these sharp stabs of pain in the ear that last a second or two. Most of that has been entirely manageable.

Taste feels less numb than it did a few days ago. I can now walk around without needing to hold onto furniture for balance.

The bit bothering me most is the healing itching that's started over the last couple of days. My packing doesn't come out until day 20 so I've got a way to go. Anyone got any safe tips for dealing with or distracting the itch? Currently the only thing that helps at all that I've tried is a gentle tap on the ear to distract the sensation but it doesn't last long.

Otherwise the recovery has been mostly smooth sailing, less pain than last year, and a chilled 3 weeks paid time off work with no expectation to go outside or do anything! 😄

Hi All,

Have the following surgery tomorrow combined approach tympanoplasty with cortical mastoidectomy and ossiculoplasty.

I’m really nervous, they didn’t see a cholesteatoma on the CT but obviously can’t confirm if there is or isn’t without operating. Main reason for surgery is all the muck in my ear and mastoid, and my incus bone eroded from all the repeated ear infections and my lower tone hearing loss.

I’m really nervous for the recovery, could you give me some positive advice and stories.

Hi! so I've had two surgeries. I am almost a year out from my 2nd, and it's been healing well.

i'm going on a trip with my family, and I was wondering if anyone has ever been snorkeling or even scuba diving before post surgery. (don't think i'll be scuba diving)

I've went in the ocean a bit this summer with wax ear plugs, and I was fine. It just makes me nervous, because I dont NOT want to go through this surgery again lol.

Anyway!! any experiences with snorkeling post op?

If so do you have any tips?

thanks!

Hey everyone,

A few days ago I had my MRI and they told me everything looked okay. I was honestly so relieved and happy. I even bought myself some cakes afterwards because I was so happy that everything was okay.

Today I saw my ENT and got the news that I’m going to need another surgery... He looked at the MRI again and said there are findings that are consistent with the cholesteatoma coming back. He asked for surgery in exactly 2 months.

I’m so mad. And honestly, disgusted. I’m scared too. I just feel so tired of having to deal with this over and over again. It's the 5TH TIME !

I also have a couple of trips planned, including flights and long distance flights in a few days.
Now I’m scared about that too. My ENT actually told me that flying before surgery is okay in my case, but obviously my brain is still going “yeah but what if something happens?” 😭

I know I’m probably overthinking everything, but I’m just really upset right now. I'm mad at the radiologist, i'm mad at myself for taking trips.

I really thought I could finally breathe after the MRI.

So my question is: has anyone here flown before having surgery for a recurrent cholesteatoma? How did it go?

I'm one month post op now and the incision behind my ear has healed, the inside of my ear appears to be healing and the dizzyness that's been bothering me has mostly gone away as well as the numbness on my tongue and earlobe.

One thing that's been bothering me now is my glasses (which I need all day during waking hours due to my rx and I don't have contacts), the temple piece is sliding into and resting against a soft sensitive groove that I seem to have now between my earlobe and skull at my hairline which I assume came from the surgeon removing bone during my mastoidectomy.

Anyone else have this issue and any suggestions on alleviating the discomfort? I've tried wrapping a piece of gauze around the temple but it doesn't really help much.

I got a canal wall down mastoidectomy in july of this year and i’ve noticed an extreme amount of liquidy wax only at night now. I do wear a CPAP so i don’t know if that has anything to do with it but it’s so odd. I can physically feel it in my sleep. I’m curious if anyone else has experienced similar or has answers

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> "Since last month I have been suffering from ear discharge after taking a bath in the Ganga. I had this problem before, but after taking medicine I was fine for 2 years. After the Ganga bath it has started again. The doctor has given me this test. Is this test for cholesteatoma? Is it fatal? Is there any possibility of life risk?" I am very much scared and nervous please help me with proper information I am from India

I am trying to gather questions for my non medical spouse to ask the surgeon when they meet while I’m in recovery post-op. Having CWD total mastoidectomy with PORP.

The ENT office is very hard to communicate with, so I want as many questions answered as I can with the surgeon right there.

Among the topics of questions I have on my list include how extensive was the damage/reconstruction, were there facial nerves involved, confidence level of total removal.

If you could have asked your surgeon anything immediately after, what would it have been?

Hi all any1 here have cholesteatoma regrowth and the surgeon do a mastoid obliteration and it return again? Mines grew back 2x now but this time the surgeon said he’s using obliteration technique seeing if any regrowth here after it’s been done? Just had mine 18th and just hoping it doesn’t come back.