Chronic ear problems User Group
Any advice for post-cholesteatoma surgery?
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Current or past sufferers of hearing or other ear problems.

Founded by 44maymee on September 28, 2009
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Any advice for post-cholesteatoma surgery?<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

I had a large cholesteatoma removed a month ago.  For those who are not familiar with this, it is a benign growth of dead and living skin which forms in the middle ear through a perforation or retraction of the ear drum.  Because of  a chronic inner ear infection a lot of the mastoid cavity was destroyed and also all of my ear bones were affected and I lost almost all of them; the remnant of the hammer (manubrium)  which is attached to the eardrum was removed along with most of the eardrum.  The doctor was able to remove the infection in the mastoid and middle ear and save the footplate of the stapes, a vital component of the hearing process.  The eardrum was repaired with a large graft, but with no hammer.

In about eight months, I will have the second stage of the surgery where the doctor will inspect the middle ear to remove any regrowth of the cholesteatoma and implant a titanium prosthesis to replace the missing bones and hopefully I will regain a hearing level better than what I had before the surgery.

Has anyone had this procedure and if so, how are you doing now?  I did not find much practical advice for pre surgery and post surgery regarding what to expect as far as anesthetics, pain, dizziness and even what to take to the hospital and what to have on hand at home for the first few days to eat and take care of the ear.

If anyone is curious, I would be glad to share my thoughts and experiences.

In the meantime, I would urge everyone who has had long standing problems with ear infections, tinnitus and gradual hearing loss to please get an appointment with the BEST ENT or otologist that you can find.  Do not depend on your primary care physician to diagnose ear problems.  In my experience, they do not know what they are looking at and may not even inspect the entire eardrum and can miss a retraction or cholesteatoma.  (this is not just my opinion, but the opinion of ENT's.  This is just my opinion based on my experience and what I have read.  

I was sent to an ENT six years before I found my current ENT on my own.  I consider the first ENT a quack (my own name for him) and he is no longer in practice. That was six years lost and perhaps was also the time when my hearing bones were being dissolved by the cholesteatoma.  The primary care physician I had all those years did not recognize my problem either.  So, please do not put up with any of your ear problems like I did and like so many people do.  No one took the tinnitus seriously and yet my current ENT told me that likely the noise would abate and possibly stop once the irritation and infection was cleared up in my middle ear, and at this point, he is correct;  As I sit here now, I have very little noise in my head.  It comes and goes, but I actually have times when it is quiet.  I believe now that there IS a REASON for the tinnitus.  The CAT scan that I had left no doubt the reason for all of the problems that I was having for all of those years.  We are so fortunate to have dedicated ENT doctors with the expertise to use the marvelous new instruments to perform the delicate ear surgeries and save our lives and save or restore our hearing.  I am so thankful that I found The House Ear Clinic and Dr. William Luxford.

Not only did I have one of the best surgeons, but I also found out how to have my insurance company pay for the surgery at the hospital he uses.  So if your primary care physician sends you to a ENT you don't have confidence in or want a second opinion, do not give up, insist on seeing the best ENT in your area.
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