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3 Surgeries later...

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sharon41313
sharon41313

I joined this group to offer my story as a resource for others currently dealing with this disease. I remember how much research I did prior to my first operation and am thankful others have shared their experiences. It provided me a level of comfort knowing I was not alone in dealing with this issue, nor in having it gone so long as misdiagnosed.

?Growing up I suffered from a lot of ear infections. My parents thought it was a common childhood occurrence and took me countless times to the doctor who would prescribe antibiotics and occasionally flush my ear with peroxide. Hearing in my right ear was always poor. I thought I was born that way, my doctors thought it was the hard ball of wax that would form and block my ear canal that caused my hearing to decline. Never did anyone suspect cholesteatoma or even refer me to an ENT. Eventually I learned to deal with the infections and poor hearing as a fact of life. Years later at the age of 26, I began noticing a constant wet discharge as well as small amount of blood draining from my right ear. Went to the doctor and was told it's common to have some blood mixed in with wax. His solution was to flush the ear and prescribe antibiotics. I decided to refer myself to an ENT at that point because it's kind of scary seeing blood on your pillow in the morning. ENT ordered a hearing test and CAT scan. He diagnosed the cholesteatoma but informed me that my case was exceedingly complicated and he did not feel comfortable operating on me. Thus I was referred to my current doctor and surgeon at the Hospital of University of Pennsylvania. My first surgery was 7 hours and a canal wall down. The choleteatoma had progressed to the point that it destroyed all my hearing bones and had began to erode the plate separating the ear canal from the brain. All the hearing bones were removed and I am now permanently deaf in my right ear. Recovery wasn't as bad as I expected (and I am a wuss when it comes to pain). The first 3-4 days were rough but a week later I was up and about. The dizziness took a while to fade though and I would get bouts of vertigo every so often. 

?About a year after my first surgery, my doctor was microsuctioning (ear needs to be cleaned by the doctor every 6 months or so as it cannot clear itself after a canal wall down) my ear and noticed a granular growth. After clearing it, I began having clear fluid continuously drain from my ear. Turns out some cholesteatoma was left behind during the first procedure and ate through the brain plate causing a cerebral fluid leak (the fluid surrounding the brain). I was admitted and scheduled for surgery the next day as it was a serious complication that needed immediate attention. My doctor said that in the 27years he had been treating cholesteatoma, I was his first patient to suffer from this. Just my luck I guess. Second surgery recovery was much easier than the first and I was driving within the week.

?This brings us to my recent surgery (#3), which was last week. Started noticing a whooshing sound in my left ear (my good ear) when I would lay down. Brought it to my doctors attention when I went for my semi annual microsuction cleaning. He looked into my left ear and ordered a CAT scan and hearing tests. My hearing had began to decline rapidly since my original hearing test in 2013 and the CAT scan showed cholesteatoma. Not wanting to wait and give the disease an opportunity to further erode anything, we scheduled the surgery to take place within the month. This one was down as a canal wall up and doctor said my hearing bones looked good so that's a positive. Recovery hasn't been too bad so far. Only downside is it's very frustrating not being able to hear very well. My left ear is clogged up with packing and gauze after surgery and my right ear is pretty useless.

?Hopefully this will be my last go around with Cholesteatoma, although the semi annual doctor visits are for a lifetime and not being able to go swimming with my daughter is hard during the summer. My doctor is giving me a 20% chance of reoccurrence, so hopefully I'll luck out.

?Hope someone finds my experience helpful in their fact finding journey. Please feel free to leave a response with any questions. I am happy to help smile 

0 likes, 2 replies

2 Replies

  • george53690
    george53690 sharon41313

    Posted

    You have definitely been through the wringer. My wife is the one with the problem. Like you her parents treated the leaking ears as a child hood thing. My thoughts are with you. Hers was discovered when her mother was at the specialist. He said something she did not hear and he got her into surgery. Like you many had looked over the years and no one had realized that there was a problem. The surgeon managed to fix one ear. The other is an on going problem.
  • ashlie93
    ashlie93 sharon41313

    Posted

    I have a very similar story to yours! However when I was 12, I went to my ENT for a sore throat. He immediately looked in my ear and told me I need to have surgery ASAP. He saw I had Cholesteatoma prior, didn’t say anything and was keeping an eye on it until now. 

    He tried to do the surgery but was not comfortable and getting to close to facial nerves so he sent me to OHSU to have the surgery completed. 

    I have no canal wall, 2 out of 3 ear bones were completely eroded and are now gone. I only have about 20% hearing in my right ear now and use a hearing aid... it doesn’t help much though. 

    I continue to go for the frequent cleanings. However, 12 years later my ear has slowly started to recover to where I’m only going for cleanings every 8-10 months (the longest I have waited is a year and it was pretty bad). 

    I’m 24 now. Loving the dream... haha I’m glad someone else knows what it’s like!

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