Chloesteatoma info

Posted , 8 users are following.

Morning all,

I have recently be diagnosed with Cholesteatoma after suffering with "an ear infection" for the past 3 years and I'm not sure what to expect. After having CT Scans and seeing the ENT specialist I was told that the infection is sitting dangerously close to my brain and was put on a strict course of antibiotics and steroids and given an appointment to return on the 12/05/2015. It has been confirmed I need to have surgery and they will be going in behind the ear but I have no idea what this is actually going to involve and what the recovery period is likely to be?

Can anyone advise?

Many thanks

0 likes, 7 replies

7 Replies

  • Posted

    Hi, mine was also close to the brain. I hope you go on ok. Also it was paralysing my face and I already had some numbness. The op went well though. Not as bad as expected but I got a paralysis on the opposite side that was none related. ....A long story. Best wishes
  • Posted

    Hello. I'm no expert by any means, but your situation sounds like mine only yours was caught far far sooner than mine. I suffered from those chronic ear infections for over a decade before I became very very ill. I began getting. Very high fevers that would last weeks. I'd be so wiped out I was u able during these periods to do much more than whisper and drink water. My throat would become so sore and swollen that I wouldn't be able to eat for days. This would last weeks then go away and return over and over again. Finally after having been unable to ingest anything g but water for a week I went to ER. They started me on a strict course of antibiotics s and gave me some much needed pain meds and anti inflammatories, so that I could eat, and just to be sure they ordered a ct scan. . after which thehad asked him to take a look at my ct. He explain ed that they had found something and that the situation was much more serious than they had originally thought. He wanted me to return to the ER immediately. Upon arriving back there I and after hours of waiting, I finally met this specialist. Who went on to exain that not only did I have a growth behind my ear drum but it had also eroded the bone plate between my eardrum and my brain. Then went on to explain that if I did not have the surgery I would die. For my surgery it was neccessary to have a neurological surgeon assisting because it would need to be separated from my brain. I was of course terrified. I had a baby 18 months ago. I had not been hearing well for so long it was just a matter of course for me by this point. I had been living with the extreme dizziness for so long that my body naturally had learned to compensate. It seemed to me as though knowing what had been going on and the risks of fixing made the dizziness worse. I would be walking or standing g still and suddenly my my head would spin so bad I'd almost buckle. For the sake of my young baby and family I of course opted for the surgery. Twice it had to be canceled due to active aggressive infections on the scheduled date. The third time I made it to surgery day completely healthy. As I could be anyways. I woke up in extreme pain, and was promptly given the max dosage of the first pain medication ordered for me. It did nothing to lessen the pain so I was given dosage of the only other pain medications I was prescribed. I'm not sure why but at the time immediately following my surgery the pain medication did not work at all. I know men cannot have children but the pain compaired very closely to that pain. I went through three entire scripts if pain meds in this first two weeks. It seemed to ebb considerably about a week after. Now however I am again in xtrwme pain that has now started a slow intermittent throb from behind my ear to the middle of my neck. It comes and goes steadily and seems to be increasing in strength and frequency. I have been piggy backing Tylenol and ibuprofen, I had to discontinue the use of the narcotic pain medication because I could not have a bowement for anything on them. I have since reconsidered of course. I was warned not to lift over 15 lbs for the first fourteen days. STRICT. I was prepared to expect a recovery period of four months maybe more. It was also exained to me that I would feel very very tired for these months of recovery. All of this has been true. What I wasn't informed about was what was left inside my ear. This I supposed is the packing that I've been reading about. I was told to leave the inner dressing in place that it would be removed by my Dr at my first check up. I was to take antibiotics orally and in drop form . and to keep a cotton ball with vasaline on it in my ear at all times. Now you know what I know so far. I have not let myself notice the loss of hearing. Or decrease as may be. I have had less than 30% hearing in my right ear for so many years I hardly realize it anymore. I am very curious to see if my reconstructed hearing structure will improve my hearing as the packing comes out. One week till my first check up. I almost can't wait.... I have so many questions. I guess all I can tell you is what I have always believed; when going I to something Hong like this where the out come is u known or possible dangerous, a positive attitude makes all the difference in the world. Its scarey but stay positive and I'm sure you will come out okay. Good luck. Keep in touch.
    • Posted

      I do apologize I write from my phone and there was some sort of error amid my typing it seems. After I wrote about having a ct scan the next sentence was somehow erased? They sent me home and next after noon as I was rolling my flat tire up the block to the repair shop I received a phone call from an Ent I'd never met before. One of his colleges had treated me and asked him to take a look at me scan. Which apparently alarmed him as he he requested I drop what I was doing and return to ER immediately.
    • Posted

      hi mosdefkris,

      i had my surgery in June 2016. In suppose my situation is same as yours. the bone had eroded til up to the bone plate near the brain. Doc has removed the affected area and now im in the recovering process. According to the doc reconstruction of ear canal is not necessary for me at the moment. however i need to go for a life time follow up check up.If there is a need to do another surgery it may involve neurological surgeon. May i know did the surgeon perform the reconstruction ear canal on you?  and how are u after over a year since the your surgery? thanks

  • Posted

    Hello I also have chloesteatoma in my left ear - I had tympanoplasty surgery to remove it in September 2015. However this wasn't the first time I've had the operation, unfortunately my chloesteatoma came back 10 years later. I am currently still seeing my ENT doctor and have been referred to a specialist as the most recent operation was unsuccessful again! sad I am unsure of what the next stages of my recovery will be as the specialist doesn't really want to do laser removal surgery. I currently have a CT scan booked in for next weekend to see what is actually going on in my ear. Does anyone have any similar experiences and could put my mind at ease to whether or not my ear will actually ever be "normal" again? Thanks

    • Posted

      I do not have a normal ear having 4 operations. Once for partial mastoid op which was not a success when I was 7. I had a discharging ear and continual Hospital visits, once a month, or every week until I was discharged from Hospital with a discharging ear. 40 years later another op and more bone removed. That is when they found Cholesteatoma. I went for check ups for 5 years and discharged.  5 years later I had another op. This time all the mastoid bone was removed as the Cholesteatoma had eroded the bone and gone into the lining of the brain. I guess that what everyone means by brain plate. I was still going for check ups every 3/12 and needed to go and get it removed again after a year. I was discharged 5 years later as my ear was self cleaning. My Consultant was excellent. Unfortunately my ear started to bother me again last year. After many infections for a year I was eventually seen on Wednesday at ENT and had microsuction with removal of brown crust with inflammation underneath. He does not think I have return Cholesteatoma but go back in 6 months for a check up. I never had a normal ear just the bane of my life through getting measles at months old and a discharging ear which was mopped out every day with district nurses until my first op. Has anyone else had microsuction and brown debris.?
  • Posted

    Mine was dangerously close to the brain as well. Depending on your doctors skill and level of knowlege several things could happen. With the continuous advances in endoscope technology many docotors are using these to give patients a better chance to have a canal wall up surgery meaning less invasive. However the tough part about cholesteatoma is the doctor doesn't know what he's up against until he is in your head literally. I would prepare for the worst and hope for the best. Recovery is different per peson after the first surgery it was about a month recovery for me not for pain, but to be able to go out in public and go back to school without a giant head wrap on and actually be able to shower and not smell lol. Mine was extremely close to the brain and i was able to have a canal wall up with no complications (taste loss, facial paralyisis) to date and just had my second surgery back in december 2015 however I have like 20% hearing in that ear now since it gutted everything.  

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