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Booked in for surgery on 17 January and worried - looking for others to share experiences please

Posted , 3 users are following.

tracy99567
tracy99567

Hi, I’m 50 years old and last year suffered an ear infection resulting in perforated ear drum and blood on pillow etc.  Nothing major I thought but a few weeks later my GP referred me to ENT in Victoria Hospital, Kirkcaldy, Fife where I underwent several rounds of suction - end of problem I thought.  I was then sent for a scan and this resulted in my consultant advising radical mastoidectomy.  I was shocked and have had a second opinion from another Consultant but the advice is the same.  They think my mastoid bone has already been “eaten into”  and have said there’s no alternative but to operate.  I’m dead against surgery as I’ve researched (not only horror stories but the good too) and I really cannot see any benefit from surgery other than the disease will not spread to the brain - forgive me if this sounds trivial - I’m well aware it’s not but at age 50 is it worth me having surgery?  I suffer no pain at present and no symptoms at all (this probably is why I’m in denial) and who knows how long I’ve had this undetected so who knows if and when it would spread?   After a frank discussion with my Consultant, I’ve agreed to surgery but the nearer it’s coming to the date, I’m again doubting my decision.  Can anyone give me details of their experience please?  I have my pre op appointment this week so will know more about what they indend to do but as far as I’m aware, my case is severe and talk of rebuilding war drum, removing bones and replacing with parts of skull etc were phrases stuck in my mind when I was talked into agreeing to surgery.  I know there are lots of people in the world going through a lot worse but I have issues with hospitals (unfounded probably as I’ve only ever stayed in one to have a C section 19 years ago).  I think I have a higher than normal pain threshold and never take medication unless absolutely necessary and prescribed (I don’t take headache tablets, cold remedies etc) and I’m rarely unwell.  Can anyone help me with my concerns?  Has anyone been diagnosed and refused surgery?  Apologies if my medical terminology is off,  I was in a state of shock and denial and didn’t take in all of the discussion.  

0 likes, 6 replies

6 Replies

  • rob76554
    rob76554 tracy99567

    Posted

    I went through the same issue. I had the surgery, bones removed. Mastoid wall scaled down. Ear drum rebuilt. One year later I had an exploratory surgery to make sure it was all removed. This was 25 years ago. I can not get water in the ear, so I permantly use ear plugs when swimming and taking a shower. My hearing is 75% still there. Just make sure you go to a top notch surgeon who specifically deals with cholesteatoma. The other option is just not do anything and hope it doesn’t get to your brain and cause menengitis. That was a big fear of mine. Menengitis will leave you permanently disabled. Weigh the benefits of both having and not having the surgery, and do what’s best for you. If you want my opinion, go through with the surgery. You can go for a third opinion if you feel like you need more of a solid he or no. Good luck. 
    • tracy99567
      tracy99567 rob76554

      Posted

      Hi Rob - thanks for replying.  The Consultant advised of the dangers of ignoring this and explained I could develop meningitis, brain hemorrhage etc and I should try get my fear of the operation by telling myself I will be asleep and know nothing about it then deal with what comes next in the recovery period.  I know this is true and she was quite graphic in telling me what would happen if either of these did happen and it would be far worse than facing an operation.  Within myself I know I have to have surgery but I’m worried about the after effects of the operation and the recovery - pain, dizziness, ear ache, etc - all the horror stories have scared me and I know not everyone is the same and some people (although not many I’ve read about) sail through it with no real pain or issues.  My Consultant said had I been in 70s then yes ignore it if I wanted but every day I opt not to have the operation, I’m rolling a dice.   Thank you again for replying and hopefully I’ll be one of the lucky ones.
  • rob76554
    rob76554 tracy99567

    Posted

    I agree with your surgeon. The dangers of not having the surgery are immense. God forbid you develop menengitis or a brain hemorrhage then you’ll have to have brain surgery, and quite possibly not make it through that type of surgery without severe long lasting disabilities. Just know that you are in good hands, ask a lot of questions, and make sure it’s a surgeon who specifically specializes in these surgeries. All the best. I’m sure everything will turn out fine. 
  • darren03844
    darren03844 tracy99567

    Posted

    Hi, I would take the advise and get the surgery done. After many and I mean many, what I was being told were just infections by my doctor, by the time I demanded to see an ENT the closto had already done enough damage for me to lose around 30 to 40% hearing in the affected ear after surgery. The longer you leave it the worse it will get.

    The surgery in itself was not too bad, obviously you are put under and the pain after is minimal, I know people have different pain thresholds but the only time I took painkillers was after the surgery which the nurses gave me.

    My surgery was about 18 months ago, the scar is very minimal you can hardly see it. The only downside I can think of that I have had is the side behind my ear still feels a bit weird when I move the muscle but this is slowly starting to go, what I have read is certain nerves can take a long time to rejoin.

    Also I would advise never to go swimming again after surgery without a good ear plug. I was told this summer my ear drum etc had healed well enough to swim without any. I had enough the year before of constantly changing my ear plug I decided to try. That was a mistake, I woke up the next morning with it throbbing and a loss of hearing even more for the rest of the holiday.

    Use the moldable gel ear plugs with a bit of white petroleum jelly to seal and give a good waterproof barrier. Yes they do cost quite a bit, for a two week holiday I think around £25 all in all but I go swimming everyday on holiday and no money is worth saving for hearing.

    Do not worry the surgery will go fine.

    • tracy99567
      tracy99567 darren03844

      Posted

      Hi Darren

      Thank you for replying and offering reassurance.  I was actually reading the forum again when your reply came through.  I was contemplating phoning the Consultant’s Secretary this morning to ask if there was anyone I could speak to who will be able to give me more details of the actual operation since I didn’t take it all in on my previous visit.  I was seriously considering just taking my chances and cancelling the operation too but I know I’m being stupid.  After your reply, I’ll wait until my pre op appointment on Thursday and ask questions then.

      I know surgery is the best option and hopefully in a few weeks time after my op on 17 January, I’ll be able to post on here that my fears were unfounded and all went well.

      Thank you for taking the time to help me - I’m not usually scared of things but the thought of someone drilling in my skull is freaking me out and keeping me awake at night as the dreaded op gets closer.  

  • rob76554
    rob76554 tracy99567

    Posted

    Don’t think of them as drilling into your skull. That’s technically not what they are doing, they are just shaving away the bad parts. Think of it as them using sandpaper to shave away the crap. You’re going to be fine. Remember, for all the stories you read on the internet about things that have gone bad, for every one bad story, there are probably 1,000 success stories. People do not post or look for information when things go correctly.   So take everything you read with a grain of salt. If you feel unnerved, call your ENT and ask how many of these surgeries have they done, what were the outcomes, is this something that they consider a routine operation, or do they rarely do these types of surgeries? If you do not feel confident with their answers, then search around the web and look for ENT’s in you area who specialize in cholesteatoma. In the end, I think you’ll be fine, and glad you’ll never have to worry about the outcomes of having a c-toma in your head. 
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