Cholesteotoma surgery

Ears, nose and throat
1

Hi Everyone,

Last friday, a week ago I did have a tympanic mastoidectomy to remedy a cholesteotoma in my left ear. The surgery itself went fine, but the waking up was rough. I had a headache I never felt before, it was all over and very bad. My ear did hurt a whole ton, but was at that moment overshadowed by the headache. My throat hurt too as a tube was in my throat for breathing during surgery. I quickly got water and some hydrocone. After that I was given some mophine. These two meds made it worse for me as I got very nauseated. So I got ibuprofen 800mg. That did a way better job for me and things calmed down. I did drink a lot of water, but I couldn't pee, it just wouldn't come out. So, after measuring my blatter the nurse decided to put a catheter in. Another nurse, more experienced with catheters in, came in to help as it didn't go in easily as I have an enlarged prostate. After some twisting and pushing, it got in and they got 0.88 liter out of my blatter. Putting the tube in was somewhat painful for sure, a little more that somewhat, but it's ok. During the night I was able to pee again happily. I had to stay one night, because I had no one to take me home. I will say, it was great that I was able to stay overnight, because the not being able to pee would have been a real problem for me at home and at the hospital they could remedy it. The next day was quite ok actually, I was able to get out, walk out of the hospital and take an uber home. At home I had to walk my dog as he was alone for 18 hours. Sunday, the second day was worse than Saturday for some reason, but managable with ibuprofen. It's now exactly a week after the surgery and things are getting somewhat better. I still take pain meds, but when i simply sit down and type like this I don't have to take them. Balance is not perfect for sure, so no running or other certain movements. I kept the place behind my ear covered with vaseline (petroleum jelly) as it helps the healing of the skin a lot. I also keep changing the cotton ball in my ear. I hear almost nothing out of my left ear. The Dr said that my hearing bone was eroded and the staples was disconnected from my incus. My eardrum was reconstructed with a graft as most it was taken out. My hearing was reconstructed and I hope that I'll hear something again as time progresses. The pain after surgery is different per person I think. It's well managable with ibuprofen in my case (800 mg). I can take it every six hours if needed. In the beginning I got quickly nauseated by getting up, focussing on a screen and other stuff. A week later though it's quite somewhat better. I did drive the car two days ago, but that wasn't fun. It made me nauseated and not feeling well as I had to stay focussed and that's not one of the things advisable after ear surgery.  I went straight home again after paying for some petroleum jelly. It's just me and me dog here and no one else. Happily I did had enough food that last until now. I mainly wanted to share my experience after the cholesteotoma surgery. I am 43 so healing will be slower compared to when you're 20 or something like that. But, it isn't that bad considering I have no help, had to walk my dog every day, also after surgery multiple times every day. The thing is that you have to take it easy. Be ready to lay down in bed quickly, because sometimes it's too much and you just need to lay down. No sudden movements, no blowing your nose and sneeze with your mouth open. It's a blessing that I took a week off to recover. I'll try if I can start moment again full time Monday and otherwise I'll begin for a couple of hours and build up from there. I expect that in two weeks time recovery is certainly enough to be working full time again. It depends per person and some young people could likely already be working in a week. I wish everyone the very best. If anybody has questions, please ask and I'll try to answer. If you have a surgery for your cholesteotoma upcoming, don't worry, the waking up can be a bit rough, but after some ibuprofen 800 mg you'll be fine. No opioids for me. I do have them at home as I did get them, but I don't use them, it only makes me nauseated. It would be nice if you have somebody close to you that can help you a bit as it isn't very practical to be alone after surgery. I can tell you that, but it;s fine.

Cheers.

2

Hello Mipam,

What a  lovely insigtful e mail... I am sure this would be very helpful for many who are about to have this surgury..... 

3

I was 48 when I was diagnosed with Cholesteotoma and had a modified mastoidectomy. When I was 57 I had a radical mastoidectomy with the Cholesteotoma having eroding all the bone and attached itself to the lining of my brain. I was off work 3 months and it was a whole year before I was fit again,

4

Hi, If I would have waited longer, all bones would have been gone too for sure. I did have a good discussion with the Dr/Surgeon about cases and in your case your surgery was likely done in teaming with the neurologist, because it was already in your brain? That is a more complicated situation than mine. I was in the middle, it already eroded my hearing bones, but it didn't erode the bone between my ear and my brain yet. So I was talking about a surgery that was more "regular". Earlier in Boise I was misdiagnosed and people thought it was just some fluid and an infection. After I moved to Vancouver Washington i saw an immunologist who was insure about what he saw in my ear and he requested an ambulatory referral to a ENT Dr. The ENT Dr suspected a cholesteotoma. I asked to do a CT right away instead of an audiogram. The CT was indicative of cholesteotoma and he referred me to a EAR specialist in Portland Oregon. The first time I visited the ear specialist he strongly advised to have a surgery. Two was after, last Friday the surgery was done. I feel lucky that it all went quickly. It is not easy to describe what I felt in my ears before the surgery. I feel lucky that I got the ball rolling. Generally it is important to be somewhat vigilante in health issues and if you're unsure try to see a ENT Dr to have it looked at. I realize that for many people it might not go the same and they end up with more complications like you where the disease already affected your brain. I hope you didn't get meningitis? So it came back again for you and that time it was more aggressive? Thanks

5

Hi Raji, I tried to explain what happened to me so people can read it and know what might be ahead of them. Nowadays, a cholesteotoma surgery is more standard and not something to worry about. With pain meds its well managable. It differs per case of course, but in general, when the brain isn't affected yet and the bone between the ear and brain is still in tact, it shouldn't be too big of a deal. As the Dr said: "I've had patients that needed almost no pain meds and I've had patients that needed all pain meds they could get". Thanks.

6

Hi Mipam

Good that you got the surgury done ASAP. U must also look at rectifying your hearing loss now if possible. Get an audiogram , figure out teh degree of hearing loss. See if a  hearing aid or a CROS device would be of any benefit. Early rehabilitation is crucial.... Talk to ur doc first...

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Hi Rajikp,

Thanks for your response.

The very first appointment at the ear institute I did get an audiogram before the surgery. Oct 11 is my post op appoinment and I'll see what'll happen then and post about it. In a recent reply from my Dr he said I should hear hearing improvement in 6 weeks. So, I'll bring it up at Oct 11 and see what he says and I'll make an appiontment 4 weeks after to have an audiogram done again. Right now I don't hear anything from my left ear. I am not sure whether it is normal to hear completely NOTHING after surgery, also after a week or whether it's an anomaly. Some responses upon this question would be nice. What is considered not normal in recovery. My Dr seems optimistic, but I am not sure he processed that I said that i can't hear anything from my left ear at the moment. I am probably expecting too much in such a short time frame. The packing inside my ear should dissolve automatically in time and on stuff on the other side of the eardrum, will that be taken out or dissolve as well? I am not sure.

Thanks,

Reinoud.

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Give it few weeks months of recovery time before getting the audiogram done. Soon after the op I wouldnt expect much response acoustically  ....Goodluck

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Will do so indeed. Thanks

10

It's now Oct 4, Sept 23 I did have the cholesteotoma surgery. I was able to go to work today. I am happy about that. Today I only took once Ibuprofin. A world of difference between 12 days ago and now. So even for a person of 43 the recovery goes relatively fast. If you're 20, you're likely on your feet again within a week. Oct 11 is the Post OP appointment, more news then.

11

Hi

I am scared of surgery itself

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Hi Ambika,

This is why I wrote about my experience.

Are you in need of cholesteatoma surgery yourself? I live alone and the next day I was walking my dog shortly again. I am 43 years old. It's now a month ago and I only occasionally have to take pain meds. Ask any question you like. It's very normal to be scared of surgery. I'll try to explain as good as I can. Thanks, Mipam.

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Hi Mipam

Thanks for replying.

I got my surgery tomorrow.. and really scared so much. I never had any surgery in life .. especially since I read lot of stuff on internet on how is it done like drilling incision etc scaring me a lot.. what to expect after surgery.. will it be all ok afterwards

Need ur prayers immensely

Please pray for me

Thanks

Ambika

14

Hi Ambika,

So you'll get the surgery today.

It's normal to be scared over this.

Well, when you wake up it will be a bit rough, but mostly due to the anesthesia. A sore throat, a headache and pain in your ear.

So, what I did is drink quite some water.

The medication that worked best for me is Ibuprofin 800mg.

Morphine which they pushed in my IV only made me nauseated.

The hydrocodone also made me nauseated.

So, when you'll wake up, they'll wheel you to a room where you can stay a while. I really didn't like that as I was very nauseated.

This is due to the anesthesia.

With the ibuprofin the pain will become well managable, however, this might be different from person to person. The default is that they'll give you opiate medications for the pain after you wake up.

It takes time for the anesthesia to wear off.

If you can, stay the night in the hospital.

In my case I couldn't pee anymore after surgery, but that was also due to my enlarged prostate.

This is also different per person.

Take it easy and do not panic when you feel pain.

Ask for pain medication right away instead and keep your head cool.

Panicing makes things way worse.

Also, you'll  have some problems with your balance right after the surgery as the Dr will need to scrape some tissue from your balance organ.

So, what I am trying to say is don't worry too much.

With pain meds it's well doable and managable.

It would be nice if you have somebody that is able to drive your back and can help you when you're back at home, but not strictly necessary as I was alone as well and did fine. 24 hours AFTER the surgery I was walking my dog outside.

I'll pray for your Ambika. Please let me know how the surgery went.

Ask anything you like.

If you feel you want to chat, i'll share my email and in my email I'll send you my phone number.

Take care, stay strong.

Mipam.

15

I'm writing because I believe my 16 yr old son has cholesteatoma. I really need your feed back... if you have this dose this sound like you???.....Two years ago after seeing E.N.T. for reoccurring ear infections and no results... ,misery,and way to many meds, I GOT A SECOND OPINION on his ears asking if the doc might place tubes. The surgery went great! He was problem free..he could hear...(not perfectly he had lost a tad of hearing from repeated EAR DRUM RUPTURES in the past.) He was sooooo happy being free from ear infections ..his ears could finally drain! Then in the past few days something has gone wrong. He felt PRESSURE ,HEARING LOSS,EXTREAM DRAINING WITH FOUL ORDOR. I took him to a zoom care clinic because it was the week end. The doc. Could not even see an eardrum!...there was so much debris in the ear. They gave ear drops. He continued to suffer but shocking enough no real pain..... One day passed. ..can't hear very well WHITE GLOBS LIKE PUS come out. NOW I GO TO ANOTHER DOC. AT ANOTHER CLINIC FOR A SECOND OPINION! AGAIN This doc. Cannot see his ear drum either! And took a swab and took out some of the glob. She has referred him to an E.N.T. I'm worried to wait a week with this.... I'm really convinced in myself that he has cholesteatoma. Those who have had cholesteatoma dose this sound like you? Did you suffer DRAINING,PRESSURE,HEARING LOSS? Was the drainage NOT WAX ONLY BUT FOUL SMELLING GLOBS, AND LEAKING?

16

Hi Nicole,

My reply needs to be judged by the moderator.

Mostly they don't respond fast so let me type it twice.

The root cause is the eustachian tube not functioning properly.

In Europe a Balloon Eustachian Tuboplasty is performed in these cases to open this up, but in the US they are not that far yet.

The eartubes are a workaround for the not well functioning Eustachian tube. The definitive diagnoses for cholesteotoma needs to be done by a CT Scan of the temperal bones without contrast.

A cholesteotoma is often misdiagnosed by general practitioners and if the hearing doesn't get better after the treatment of the infection with antibiotics you have a clear sign already.

As your son has hearing loss WITH ear tubes, that points even more in the direction indeed of a cholesteotoma.

You need to be vigilante when it comes to health and take action to see Dr's that specialise in these areas. an ENT Dr could easily detect whether this is a cholesteotoma. The spot on the eardrum looks really different compared to when it's filled with fluid. However, the are quite a couple of types of cholesteotoma. So please stay strong. Keep his ears in a warm place so he cannot catch a cold there. Whatever you do DO press for a CT Scan as I mentioned above.

When a cholesteotoma is diagnosed, the ENT Dr will mostly refer you to a ear institute where there is a Dr that specializes in ears and does cholesteotoma surgeries frequently.

Indeed, at the ENT Dr make sure this is done as cholesteotoma only gets worse and it eats though everything.

Don't settle for anything less. In my case the ENT Dr first wanted to do an audiogram and that was over a month out. Then I argued that we would need a CT scan anyway, so he scheduled that quick and within a week the diagnosis was complete. After the diagnosis I asked how it was coming with my referral to an ear specilist by the ENT Dr. After checking he apologized, because it's been left on a desk somewhere.

After the referral was done, I could get an appointment rather quick with the ear specialist and even without having seen the CT scan he could see, by simply looking at my eardrum I did have cholesteotoma.

They have a microscope to look inside your ear etc.

Good luck with this and remain on top of it.

Thanks,

Mipam.

17

Also, in addition, there might be a small blockage in the outer ear itself if the eardrum cannot be seen anymore. I hope your son is quickly seen by the ENT Dr.

18

Thank you for getting back to me. I'm going to call and start making an ergent plea,that they move as fast as possible..if no response in a day I'm going to e.r. and ask for help. I'm feeling really down today about this. I have other obsticals going on to,but my main priority is contacting them...it's almost 8:00 am here in Milwaukie,Oregon...the E.N.T. who my son was referred to should be opening soon,im calling them. I wonder if it's wise to get a flu shot for him a.s.a.p. so nothing worse comes...I'm afraid his ear would take a flu episode this time around. Thankfully this year I home schooled him, but he dose work at Fred Myers pushing shopping carts in the rain as well as have teen siblings that go to public school.. and It's walk inthe clinic for the flu shots..so maybe I will just line us all up. Thank you,

-Nicole-