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Balance problems after my Cholesteatoma operation

Posted , 4 users are following.

david52078
david52078

Hi I had an operation to remove a Chlesteatoma six weeks ago,,,I want to now return to work but I am suffering from balance problems and have a tight feeling downtrend side of my face when I eat,has anybody experienced the same symptoms and what was the recovery time from the balance issue as everything I see when walking is bouncing about.

any advise would be appreciated 

0 likes, 9 replies

9 Replies

  • Mipam
    Mipam david52078

    Posted

    I had a cholesteotoma surgery on Sept 23, 2016, two weeks ago. Last week I made a full time week at work. I still needed to use pain killers, but less than normal. Key for me is to not walk a lot and sit still and have enough rest. My balance is ok, but sometimes i'm really off and I need to sit and do nothing. I do not know how long a recovery takes. I am 43 and recovery it going steady for me, but it'll take time before i'll get any hearing back. Your situation seems not normal to me. If you got too much balance problems to return to work 6 weeks after the surgery, that seems too long to me. I took 10 days off and went to work after. A bit too soon, but it worked out well. I do like my work so that helps and I dont have to do heavy lifting or anything. Was anything mentioned about your facial nerve? You experience problems with eating. The first week after surgery my balance wasn't great, but good enough to walk my dog. I walked him a day after my surgery already. It would be good to get more reactions from people as to what they experienced and how long it took them. But I'm pretty pleased that I was able to return to work 10 days after my surgery. I am 43, so not too young, not old. Thanks,

    • david52078
      david52078 Mipam

      Posted

      Hi Thanks for the reply

      I've had problems with my Eustachian tube for two years and ended up with a chronic ear infection 16 weeks ago which eventually resulted in me having a scan then surgery which I have recovered from but I still have balance issues because the balance organ had been infected as well

      Every time I try to walk everything around me waves about, I have been told to return to normal day to day routines but this situation is stopping be from getting on with life.

      Thanks

    • Mipam
      Mipam david52078

      Posted

      Oh man, that sucks.

      So the cholesteotoma did some damage to your balance organ as well.

      So your cochlea was affected as well?

      I can imagine this is affecting your every day life.

      It's nice that they SAY you should go back to your normal life, but if your balance is affected ...... how are you going to work?

      No driving, or on the bycicle for example.

      Did the Dr mention anything more? I cannot imagine he would just send you home while he knows your balance is affected.

       

    • Mipam
      Mipam

      Posted

      I have had multiple ear infections over the last years too.

      Last bigger ear infection was in April 2016.

      In May I was able to see a Dr who diagnosed me wrong.

      An immunologist also diagnosed me wrong.

      Then I moved to Vancouver Washington and an immunologist didn't know what he was looking at in my ear so he made a referral to an ENT Dr.

      He knew quick that is was likely a cholesteotoma. I asked quickly for a CT Scan and it was clear. Referral to Ear Specialist in Portland was done and after I saw him, two weeks later I had surgery. So I was lucky that I kept pushing as my hearing didn't go better at all and I had such a weird feeling in my ear. So I was lucky to get diagnosed when I did. If I didn't follow up with an immunologist I still wouldn't know what it was and then things would have ended up worse. I wasnt early, but I wasn't very late either. The middle of the road. The Dr that performed the surgery on me is an ear specialist that does these procedures weekly and others as well. As a matter of facts, he did perform two cholesteotoma surgeries before me, I was his third cholesteotoma patient that day. He did have another one after me. So for him it was a normal procedure as he does it lots of times. He does all kinds of ear surgeries as it's his speciality. Tomorrow I'll see him again, because then it's my Post OP appointment. Finally.

      I do see more info here:

      https://patient.info/health/cholesteatoma-leaflet

      It states:

      "Damage to the cochlea and other structures in the inner ear. This can cause permanent deafnes on that side, and/or dizziness and balance problems."

      I think this is what happened to you.

      So I am not sure whether that's become any better without intervention to restore that organ if it can be done to improve your balance.

      I'll ask my Dr tomorrow about that.

       

    • Mipam
      Mipam david52078

      Posted

      Also, i did ask my Dr as I promised as I was curious about the balance. He pointed to me what part of the ear bone (not the Choclea itself) was responsible for the balance. I asked him whether sometimes the cholesteotoma did eat away some of the bone and as a result people have lasting problems with their balance. He said that that was definitly possible and that some people do have it. He also said that in that case, he would have noticed it during surgery and that in SOME cases, some bones of the balance bone were eaten away and that he closed it up again as good as he can,  but that despite that balance problems might last. He said IF such is the case that he would have notified his patient right after about that as that is definitly something the patient wanted to hear. You might ask you doc about this.

      It's mostly the labyrinth bones on top of the Cochlea. Also the bone to which the stables pounds is also important for that and in my case he had to scrape the tissue off. I asked my Dr whether he saw my bones etc and he said yes. So, you might ask your Dr about this and what excactly he had to do to get everything out.

      Emis Moderator comment: I have removed the link as users can easily find the information using a search engine for balance organ in the ear.

  • Mipam
    Mipam david52078

    Posted

    Hi David,

    September 23rd I did have a cholesteotoma surgery.

    Last tuesday I went for my post-OP appointment.

    I don't have real balance problems, but the first week especially I did have more issues with that. I get nauseated easily and I cannot turn my head too far around all over sudden or I might lose my balance. I need to move carefully and gradually. I can run a little, but it's too soon after the surgery to do so.

    Last Tuesday the Dr who is seeing me (he also performed the surgery) told me where organ the balance is functing in and he told me he had to scrape the colesteotoma off it. He told me that my balance will return gradually. I can drive my car fine. 10 days after the surgery I returned to work and worked full time.

    However, now, it's October 16, 2016, I still have to take some ibuprofen once or twice a day. My balance is good enough for every day things and I have no problems driving my car, doing groceries, walking my dog etc. I can't lift heavy stuff, can't let any water in my ear. Due to redness around my ear I have to see the Dr again this Tuesday. It's not normal. However, he said that it was healing nicely inside my ear. Not sure about you, but I still do feel pain inside my ear, by eardrum and stuff behind it. I also can hardly hear anything at all from my left ear where the colesteotoma was removed. The HOPE was that I would regain some hearing after 6 weeks, so three weeks more and I should notice an improvement.

    Also, I cannot depressure my left ear and often it seems it's pressured (Eardrum).

    Do you have this too?

    • david52078
      david52078 Mipam

      Posted

      Hi

      I appreciate all your advise and responses,I am now eight weeks post op this Wednesday and still struggling with the waveyness feeling I've described also a pressure on the side if my face which tobe honest feels like somebody putting their foot on me.

      I've had ear problems for two years and this was only been caught at a late stage due to a serious ear infection not clearing up after 10 weeks.

      The scan showed the Chlostatoma which resulted in the same op as yourself, I just need the ent consultant to tell me why it's taking so long to get back to normality etc.

      David

    • ravi00ei51
      ravi00ei51 david52078

      Posted

      Hi David,

      I have been diagnosed with Cholesteatoma. I feel dizzy plus wavy sometimes but it is not affecting my normal life right now. I am soon going to have an operation. Will you please let me know if your balance problems are gone or you are still facing some issues?

  • guest1
    guest1 david52078

    Posted

    Hi David,

    I had a late diagnosis of my cholesteatoma ten years ago and was left with dizziness and being unable to walk properly.

    After my operation my Specialist gave me a 'Cawthorne Cooksey' exercises sheet to do frequently (every time I felt dizzy).  He said the more I worked at it the more my balance would return to normal.  I kept at it for several weeks and now my balance is almost completely back to normal.  The only difference I notice is that if I were to close my eyes and try walking along a line I'd fall flat on my face, whereas other people (like my wife) can do it without a problem.  I think the exercises have helped train my senses to rely on my vision rather than the false readings coming from my bad ear.

    I spoke to a nurse in when I was in hospital who had a friend with a simialr problem and she told me the recocery of balance can vary between weeks and several months to get back to normal.  I was worried I could not drive/work at the time but now have no problems.

    Hope your balance improves - I'm sure it will in time,

    best wishes, Steve

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