I have recently had a large Cholestatoma removed from my...

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I have recently had a large Cholestatoma removed from my left ear. After being told by 2 doctors I had the condition a 3rd decided I didn't and cancelled my scan.

12 months later I was diagnosed by the eminent surgeon in this field and operated on 4 months later.

The op scheduled for 1 1/2 hours in fact lasted nearly 4 and I had the tympanic membrane grafted, 2 bones repaired with cartilidge and muscle grafted. The procedure was an atticotomy. The nerve to the left side of my tongue was severed deliberatly as this offers the best results for taste recovery apparently.

I had the packing removed at 2 weeks and repacked for another 2 and I'm waiting to go back for this.

It's early days but I'm positive. The pain lasted a week - no more than an earache, but then I've had more than a few. Pain management was Ibrobrufen and paracetomol and at no time was I in agony.

There is hearing returning despite the packing and my taste has improved in leaps and bounds.

No tinnitus, vertigo, dizziness or balance problems and my facial nerve was not damaged. In fact so far I can only regard myself as extremely lucky and my good fortune is a direct testament to the skill and dexterity of my surgeon.

I was perified before his surgery as I've never been under the knife and I had dwelled on the complications maybe too much.

I wasn't sure wether to post here but the trend seems to be that people only post bad experiences and all the negative stuff I read before going in really freaked me out. Maybe this may help to settle the balance.

I'm cautiously optimistic that this op has removed my growth and will be the end of the matter. A dry pain free ear - happy days!

Any questions please ask and I'll to my best to answer from my experince so far.

[i:dc45e0b862]This message was automatically imported from the original Patient Experience[/i:dc45e0b862]

0 likes, 6 replies

6 Replies

  • Posted

    soon i am going to have a right ear operation for the cholestatoma, for my wife,

    if you have any suggestion please forward,


    best regards

    s n

  • Posted

    My 19 yr old daughter has been told that she has to have this procedure as a matter of urgency following a lifetime of otitis media and profound deafness in that ear. We are concerned about the build up of pressure behind the newly grafted ear drum if it is much tougher than the old one (since made of cartilage). What have you been told about this? Also her specialist is talking of removing the cholesteatoma first and leaving the hole, only diong the graft later. DId you discuss an option like this?

    I feel glad that you posted this note, since we are really worried by this and by the urgency with which her specialist has moved to set up the operation date. It is good to hear that you have had a very good experience.

  • Posted

    I'm so glad to read a positive post.

    I have been to 2nd visit to ENT today, they have cleared the initial infection and today removed some remaining debris using microsuction. I am now being refered for a CT scan, to establish whether surgery is needed.

    The thought of surgery is rather worrying, but this positive post does give some perspective to the risks. I now feel a little less terrified.

  • Posted

    I am so glad i read your post. My 9 yr old daughter was diagnosed with a cholesteatoma today and has been referred for a scan to see which type of surgery would be more suitable. I am quite confused with both but understandably want what would be best for her. She has only slight hearing loss and has recently had a runny ear, first in about a year, although she has suffered from them since early childhood. I have rad all the other stories and felt physically sick with worry and then I came across yours. I wish other people would post positive experiences if only to give people like myself hope. please let us know how you are now. take care.
  • Posted

    I did not know I had this condition as I have not had the usual ear infections so it came as a surprise.

    I had my op on 22nd July 2009 and am now at home but no information was given as to how I might feel, i.e. pain on head bone behind ear, headache is this normal. I also have what my husband says looks like a plastic tube coming out of my ear canal. Did you have one and what did it feel like when they removed it. Have been told I have to wait three weeks for this procedure. They were great on the day of the op but the next day I felt I did not get enough information upon discharge.

    thanks for any info you can offer.

  • Posted

    thanks for posting a positive outcome. I am currently on the waiting list for this op and whilst the surgeon was very positive and encouraging there is still a bit of worry. Much appreciated.

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