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vicki82494 vicki82494

Surgery in 3 weeks time, what to expect when recovering?

Hi, i was diagnosed in 2016. i have my surgery in 3 weeks time on March 27th. I am absolutely terrified. Its hard not knowing what to expect when you wake up. my main concern is if it effects my facial nerve and not knowing how my hearing will be.

​is anyone who has already had their surgery able to give me some ideas of what to expect? recovery time etc?

​i am a worrier and this is on my mind every single day. i just want it over with now. Any information/support would be much appreicated.

​Thank you

20 Replies

  • Mipam Mipam vicki82494

    Hi Vicki,

    I had surgery on Sept 23, 2016. 10 days later I went back to work full time.

    I am 43 years old and my hole ear was full of cholesteotoma. The facial nerve can become damaged, but that risk is very small. The surgery really depend on the person who is doing the surgery. If the person has done it a lot of times, I wouldn't worry too much as it'll likely just be a routine procedure. Every person is different and thing also depend on how far the cholesteotoma is. Some erosion of the hearing bones is normal. The longer it goes unchecked, the more bone that will be lost. In some cases the hearing bones are too eroded and the rests are taken out. Hearing reconstruction can be done and is pretty standard as well nowadays. The outcome is going to depend as well. You might be able to hear better after two months, you might hardly hear better. The pain you'll experience might differ as well. Some patients hardly need pain medication and some need all the pain medication they need. Personally I needed quite some, but morphine and all the other stuff was terrible for me and ibuprofin worked best right after surgery. 800mg was standard for me every 6 hours. smile In 2 weeks I started taking less and less. You'll likely feel dizzy most of the times the first week after surgery with balance problems. For me though, the morning after the surgery I got up myself and took a taxi home. Arriving home I did let my dog out for a brief walk and went to bed. 

    Waking up after surgery wasn't pleasant for me. I had a headache I never felt before and it dominated most. I did have lots of pain in my ear too. Ibuprofin worked best for me. The narcotic pain killers didn't work too well for me and made me very nausiated. I remember waking up. I did blink my eyes and the rolled my bed to the room. That was gnarly for me as I was so nausiated. When I was in the room finally the nurse came and tried to help me out. Personally I couldn't pee anymore after surgery so I had to get a catheter. I will have a second surgery March 31th this month. The residues will be taken out and some reconstruction will be done as I dont hear better. I am not worried about it at all.

    Hope this helps you a little. Thanks, Mipam.

    • vicki82494 vicki82494 Mipam

      Thank you so much for sharing your experience with me. How did you feel when you returned to work?

      i have been told this should be a day case surgery and really hope this is the case and i can get home on the same day!

      How long was it before you was up and about and starting to feel normal again, driving etc?

      ​Also was you able to eat normally as ive heard your jaw can be sore after surgery sad ?  if you dont mind me asking.

      ​i always get worked up before an operation but this time im more worried about when i wake up how i am going to feel sad i will need to make sure i have plenty of pain killers at home ready.

      ​Thank you very much for sharing that with me though it has helped so much! it is so good been able to talk to people who have been through this also.

    • Mipam Mipam vicki82494

      I felt ok when I returned to work, not optimal, but fine. I did still need to take Ibuprofin 800 mg every 6 hours though. My work isn't physically demanding in the sense of walking and lifting, so I can do my work quickly after surgery. I had my surgery on Sept 23 (Friday) and the Wednesday right after (less than a week) I drove the car to Walgreens to get some stuff. That wasn't nice at all to do as it made me nauseated and you can't really turn your head far enough to look. So that wasn't great, but it worked out. My jaw was fine, I didn't have any problems with that. I did have the surgery at like .... 2 pm. The next morning I couldn't start eating again somewhat. It more that quickly after you still feel nauseated and food makes you nauseated. Most of all, you need lots of water the first 12 hours after surgery. Ok, it makes your blatter full quick, which in my case was a problem, but that shouldn't be an issue in your case as you can just pee it out. 24 hours after the surgery I was able to eat normally again. 

      Oh yes, for me: I did ask for a prescription BEFORE surgery. Initially they said I would get one after the surgery. I replied that: "So I need to drive to the pharmacy 6 hours after the surgery to get painkillers????". That was an insane suggestion on their part IMO. I said that obviously that wasn't going to be possible so I would need to get them BEFORE the surgery. 

      Important to have BEFORE you return home: Vaseline petroleum Jelly. Buy a big can of it. You'll need to change the cotton ball in your ear a few times a day and it's best to cover it with petroleum Jelly.

      Also, make sure you have enough food to least a week before surgery.

      Don't shower the first week after surgery is what I would advice.

      When you do shower completely drain a cotton ball in petroleum jelly and put it in your ear. Make sure NO liquid can enter your ear when you shower. I did have some plastic ear covers to put over my ears as well.

      You should be able to walk normally with some painkiller 12 hours after your surgery. You'll feel dizzy, but it'll work. 24 hours after surgery I was walking my dog again outside. 

      Very important: have always a cotton ball in your ear, inside the house and outside the house for sure. Your ear will be sensitive and it'll hurt when the air is too cold and you might catch an infection. Also wear a hat outside that covers your head and ear. Don't turn your head to far to one side, don't make sudden moves, in fact, behave more like a grandma of 80 years the first weeks after surgery.

      Also, don't lift anything over 35 pounds I believe it was. You eardrump and everything is very fragile, you don't want it to rupture or any rework to get out of place. It shouldn't be a problem as there is a lot of packing in your ear, but ...... you never know. I wouldn't rely on that, so just keep it cool.

      Walking is fine, but takes your steps well and don't make your head tremble when you take steps.

      When you'll wake up, well, initially you'll just be very tired and you want to continue sleeping I think. A couple of minutes later you'll start feeling pain .... pain for sure. Then the nurse will come to you and ask you: "are you in need of painkillers?" EEhhhhh really? Somebody just drilled some skull bone away and has been scraping things out of my ear and cut half or my skin open for flap the ear aside, so YES, I need pain medication. smile

      It'll kick in fast. Likely they'll give you morphine when you say you've got lots of pain. In my case I hated it and it made me super neaseated, along with all the other narcotic pain killers. But that is really different per person.

      Thing really is when you wake up, get painkillers, get lots of water and just lay back. Keep laying relaxed and still and soon enough the pain will get less with the pain killers. The headache will subside and you'll feel better and you can get sleep. Personally I have requested to stay the night after surgery again like last time. The procedure is that you go home the same day. That wouldn't have worked for me. So I requested that again the coming surgery. 

      In short, it'll be fine, just make sure that WHEN you're home again you can stay home and can take all the rest you need the first week after. smile

      Thanks,

      Mipam.

    • vicki82494 vicki82494 Mipam

      Hi Mipam,

      ​that is so so true about driving to the pharmacy to get medication after surgery! i actually thought about this myself and considered ringing the GP but i was unsure if they would be able to prescribe me anything before ive had my surgery but its worth a try because im unsure how theyll expect me to drive to collect after surgery!!

      ​i work in an office and dont really do anything strenuous so hopefully i will be fine to return to work sooner rather than later! however i am a complete wimp when it comes to pain and if i dont feel comfortable ill refuse to come back ! haha. ive heard you have the packing in your ear for two weeks and im unsure if i would be happy going out etc with that in! i bet ill feel completely deaf in that ear sad and wont know for sure if thats permanent until the packing is removed.

      ​as you can probably tell im a worrier and i literally worry about every single little thing such as been able to wash my hair!

      ​I would rather be home after surgery as i really dislike staying in hospital.

      ​how are you feeling in yourself now? are you pleased you had the surgery?

      ​you sound as though you coped very well with it all i hope i can be the same. and i really appreciate you taking the time to tell me everything !

      ​all i intend to do after surgery is rest !!

      Thank you

      Vicki

    • Mipam Mipam vicki82494

      Hi Vicki,

      I am feeling fine. No pain at all.

      Yes, I was pleased I did have the surgery, it was needed.

      My hearing didn't improve, something that cannot be explained at the moment, but that's also part of the reason to have the coming surgery in a in a few weeks. Yeah, I didn't have a very hard time coping with the surgery as things were well managable and the pain could be controlled easily. I did fly again a couple of weeks ago, so everything is back to normal. Nothing is visible, so no one is able to see that I did have surgery. I didn't get stiches or something. I did get an infection after surgery and I turned out to be allergic to neosporin. It resulted into an ever expanding real area around the skin behind my ear. It was quickly resolved though. After the infection went away, I had hardly any drainage from my ear as well. The Dr said it healed the way he wanted to. Of course the hearing result isn't as we hoped for, but I am happy the cholesteotoma is gone. In my case, the packing in my outer ear was removed two weeks after surgery. I didn't hurt at all as it was sucked out. Don't expect too much as you'll likely still wont hear much. Give it two months to heal and then see how your hearing is. You'll get a new audiogram, so the results can be compared anyway. Personally I did wish more info before the surgery, so I felt it's good to be verbose in telling how things went for me.

      Oh another thing, you might hear way more often a beeping sound in your ear, a high tone than before, I guess it's a result of the surgery.

      My Dr said it takes two years to fully heal really.

      Yes yes, rest, rest rest indeed. Thats the best thing to do. After two weeks I stopped taking pain meds to see where I was at. After 8 hours I took painmeds again, it became very clear that I wasn't ready yet.

      The female nurses said that I was a nice patient and that they enjoyed working with me as I was in a good mood before and after the surgery. Well, Ok, after I woke up I was more quiet and stuff, but they were busy as well and are trying to please you and it's better to work with them, it makes their jobs more easy as well. So I had a relative nice time in the hospital. smile

      I really wanted to get back to my dog though. So when I arrived home again I was very happy to see him and we went sleeping on the bed together as from then, things were kind of back to normal.

      I hope you'll be doing well as well. Every time is different, but after last time I am not worried at all about my coming surgery.

      Thanks,

      Mipam.

    • vicki82494 vicki82494 Mipam

      My hearing is very limited in my ctoma ear at the moment, i wouldnt mind it

      ​staying the same but i wouldnt like it to get worse sad

      Thank you so much. i will let you know how my surgery goes!

      Thanks

      Vicki

    • Mipam Mipam vicki82494

      So we'll likely have our surgeries around the same time?

      My second surgery is coming up March 31st, yours?

      During the recovery we'll have plenty of time to update how things went.

      Thanks,

      Mipam.

    • vicki82494 vicki82494 Mipam

      Yep. My surgery is Monday march 27th.

      We can update each other after surgery.

      Wishing you good luck for yours and a speedy recovery!! Hopefully mine will be similar to your first surgery!

      Thanks

      Vicki

  • carol02333 carol02333 vicki82494

    My son was 10 and had a radical mastoidectomy canal wall down. His surgeon had a neurosurgeon on standby because they didn't know how close it was to the facial nerves and an artery. Fortunately his nerves and artery were not affected, but the ossicles were destroyed. He was down for 2 days...laid on the couch or in bed. By the 3rd day he was sitting upright and playing video games. Returned to school 1 week post-op. He's had no recurrence of the ctoma, and has had only 2 minor revisions of scar tissue.

    My husband had the same surgery 2 times in the 1990s. He was amazed by how quickly our boy bounced back. Technology has advanced greatly.

    Try not to stress out. The scans cannot show everything. Yours could be similar to my son's with the nerve bundles.

    • vicki82494 vicki82494 carol02333

      Wow that is amazing i hope i can be back at work and to my normal self after 1 week!

      ​Children do always seem to bounce back better than us adults though for some reason! your son was very very brave !

      ​ive had surgery in the past for different things and i have never been as worked up as i am now ! for some reason the operation doesnt scare me but im terrified for how im going to feel when i wake up! i will make sure i have an endless supply of pain killers at home Lol.  I guess its the not knowing, nobody can tell me "this is how you will feel when you wake up"

      ​Thank you so much for sharing that with me though that has definitley helped me relax a little and im so glad your son has had no recurrence hopefully my situation could be similar !

      Thank you

  • marwan63784 marwan63784 vicki82494

    hi vicki82494 ..i had a surgary on 16thy feb 2017 ..i have some questions if u dont mind. when they remove packing from the ear ?what is the surgary name bcuz there is two technices and there is possibility for recurrence of chloestatoma ?till when water not allowed to enter the ear ?should i follow up life time with doctors ?do i need a second surgary bcuz they said it was small cholestatoma ?in the beginning i did the surgary bcuz of hearing loss and they didnt expect cholestatoma,during the surgary they found it ..i hope u get better soon smile  

    • vicki82494 vicki82494 marwan63784

      Hello Marwan,

      ​unfortunatley i cannot help you with those questions as i have not had surgery before! my first surgery is on March 27th. so i have the same questions as yourself!

      ​i have been told the packing is usually in the ear around 2 weeks. I am hoping i will still be able to wash my hair and hopefully return swimming within at least a month but i will also have to be asking these questions to my surgeon. My surgery at the moment is just Mastoid Exploration as they dont know what they will be doing until they actually get inside which is worrying!

      ​I Hope you have a speedy recovery and get well soon ! sorry i couldnt help with your questions.

      Thanks smile

    • Mipam Mipam marwan63784

      The removal of the packing in the outer ear depends per patient, but two weeks after is a reasonal expectation. There is a possibility of recurrence of cholesteotoma. So indeed, staying under control of ear specialists for live is important. Depending the recovery of the patient water can only enter the ear again, when the eardrum is healed sufficiently enough. At least a month of two months after surgery is common not to have any water in the ear. A second surgery can be likely to remove residues. It depends per Dr though.

  • Laura.xx Laura.xx vicki82494

    I had surgery in 2014. My surgeon told me it was the most extensive case he had ever seen, so much sore I have to have repeated surgery now potentially for life. I woke up afterwards and was taken to a ward, I was home a few hours later. First couple of days my ear felt numb but no pain really as was probably still drugged from the surgery. After about the third day I did get quite bad earache for a couple of days but it was managed with pain relief (I've had worse ear infections to be honest). Other than that I've no problems, no facial nerve issues or anything. It's not nice going into surgery, that's the worst bit for me because it scares me being put to sleep and the fact I can't control the situation. But you will be fine, trust me if I can do it and be fine, anyone can because I'm soft when it comes to things like that! Good luck x

    • vicki82494 vicki82494 Laura.xx

      Oh gosh I'm sorry to hear that!!

      I really hope so. I will let you know how it goes. Fingers crossed all will go well. Never been so terrified for a surgery!

      Thank you for sharing that with me.

      Take care x

  • margie27897 margie27897 vicki82494

    My brother just had surgery 3 days ago. They had a specialist in the operating room to monitor his facial nerve during surgery . All went well. He did get 2 opinions and then chose a surgeon . Hisxsurvery took nearly 2.5 hrs. Tell them you are nervous they will give u something to ease you before surgery . Good luck .

  • mira1976 mira1976 vicki82494

    Hi guys

    I had my surgery 2.5 weeks ago,

    It went well i was taken to the surgery at 11.30 and I woke up at 5.30 pm so I have no idea how long it was actual surgery

    I woke up 30 mnts after the nurse took me to the recovery room

    I felt great! Didnt feel dizzy and no pain

    My ear was sore outside and i had a packing inside

    The second day was good too but i could only eat soups , my mouth were sore and i couldnt sleep on my right side

    2 weeks later ( which was last week) i had a follow up check up

    A doctor had removed the packing which was really small but i couldnt hear as i used before the surgery

    It was really painful when she was trying to take the packing out so i felt i hardly could hear anything when i block the opp ear

    I felt so sad and a doctor said , considering that they have removed your hearing bome and put the fake one you should be able to hear even more

    I had a feeling like the ear is still blocked, like the packing is still inside

    She said it could be either the bone is not sitting on the right spot or the nevre is damaged which is rare

    She requested the hearing text which i had it 2 days later and yes my hearing is worse than before , not much as they cant tell how in % but before the surgery i could hear 8 words out of 10, now after the surgery i can hear 7 out 10

    Im seeing her in 4 days to see what would be the solution , surgery again where they will correct the hearing bone or who knows

    I still have a feeling my ear is blocked so did any of you had this feeling before?

    Even before the surgery when i pop up the ear got unblocked and i could perfectly hear and few second later got blocked again , any of you had this isssue too

    Is this like part of recoverry ?!

    Thank you

    Mira

    • Mipam Mipam mira1976

      I had my second surgery Friday, March 31. My hearing didn't improve and so this surgery was to remove residue from cholesteatoma and to do hearing reconstruction. The second surgery was 100% better in the sense that I wasn't nauseated, no headache. I complained about that before my second surgery, so different anesthestics were used and meds against nausea. Recovering now. A second surgery would be needed indeed to see what's going on concerning your hearing. Hope it gets better.

  • shaz31066 shaz31066 vicki82494

    Hi vicki how are u . it will take bit of time to recover and your hearing will be much better . I had my operation does recently to remove chloesteatoma . I can hear properly without having hearing aid . Your facial nerver is just temporary . It will be back to normal x

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