Does anyone have experiences to share on cholesteatoma, surgery and success with hearing aids?

Well don’t have the practical experience but a cholesteatoma is a skin growth in the middle ear behind the eardrum and is carried out of the ear by ear wax. Sometimes this process doesn’t work correctly and may cause taste disturbance, facial paralysis, recurrence of cholesteatoma and hearing loss.


Cholesteatomas have been recognized for decades as a destructive lesion of the skull base that can erode and destroy important structures within the temporal bone. Its potential for causing central nervous system complications makes it a potentially fatal lesion.

An abnormal skin growth in the middle ear behind the eardrum is called cholesteatoma. It usually occurs as a complication of chronic ear infection. It usually continue to grow if not removed. Surgery usually works but you may occasionally need the ear cleaned by a health care provider.

If left untreated, Cholesteatoma can cause hearing loss, dizziness, and it can even affect the brain, since it causes bone erosion (like rifyraina mentioned) and it can spread. Even after surgery, it is recommended to go to the Doctor for follow ups, since it has a 10 to 20% chance of recurring.

I had a Cholesteatoma removed 4 yrs ago, at the Cleveland Clinic.

Basically, I had a hole in my eardrum that didn’t heal normally, the skin from the perforation grew into a Cholesteatoma. I had it for a year before it was large enough to warrant removal.

My surgery was very long and tedious for the Dr. because I already had long history of infection and other surgeries in that ear.

For me, the surgery was no big deal,I’d already had multiple surgeries on both ears.

I already had hearing loss and wore hearing aids before the surgery. I still wear aids, although I have had some pretty extreme loss in the last 4 yrs. I am just now shopping for new aids.

I don’t know if it’s normal procedure, but I had an anti nausea patch behind my ear , and that was awesome ! I made a 4 hr trip home after the op and other than being tired, I felt great.

How are your Valeo’s working out? I’ve read (& watched) some great things on the Nadia line (V & IX). Big improvements from 6 year old units. Pricey - but you get what you pay for I guess… Shame it’s that way… I can send a link to the video if you’d like (just have to find it again).

Many people experience a great improvement in speach recognition. How is yours? You should take a test drive and see. Can’t hurt!!

Thanks for sharing your story.

These Phonaks have been nothing but trouble and torture. Numerous repairs,programming difficulties.

I originally purchased them in 2002,had so many repairs in two yrs, Phonak actually upgraded them, saying the model was “buggy”. We never were able to get them programmed, so they are in analog mode, with no additional programs. Needless to say, Phonak’s are not at the top of my list.

So, the hunt begins ! Ins will cover 80% of new aids, so I am going to trial the Isync. If I have to go BTE,I dunno,thinking the new GNResound.

I have good speech discrimination anyway,I have a bear of a time with low tones.

I’m telling you – TRY THE Nadia IX - Just demo them. Nothing to loose, right?
C’mon… So you tried something 8 years ago… You didn’t try the IX! Digital…

Don’t judge one book by the cover — or the content… Try them…

It is also that you as soon as possible cholesteatoma them know that in fact non-cancerous tumor in the brain and ear bones of hearing can while they find a way to end will recommend.

In 1971 I had a large cholesteatoma (nearly 3cm. diam., golf ball sized) removed from my right ear with a modified radical mastoidectomy. The tumor was a result of numerous middle ear infections as a child. The tumor grew so large that it destroyed malleus, incus and the stirrup of the stapes, and perforated the bone of the ear between the middle ear and the brain (attic). My ENT surgeon said that if I had waited six months more I would have had brain abscess and brain damage, and possible death. The surgery was successful as the tumor was completely removed, but I was stone deaf in that ear. In 1973 I had another surgery (class IV tympanoplasty) which restored some hearing in the right ear. At that point I had about a 25% hearing loss in the right ear, which was much better than the total deafness. I could hear loud sounds, and retained some directionality of hearing. Eventually the hearing in my left ear deteriorated to the point that I have difficulty hearing conversations, especially in situations where more than one person is speaking, or noisy environments.

I went last week for evaluation for hearing aids. The audiologist said that the hearing in the right ear was remarkably good considering my history. He said that with proper aids my hearing should be excellant. When he put the trial instruments in my ears I was astounded with how things sounded: Like hearing stereophonic music for the first time! I was shocked at the cost, but I go in Friday to select which HA’s to go with. It will be some version of the Starkey Series 11 IQ. Any suggestions about which units would be appreciated as I have never worn any hearing aids.

An update: I have now worn two Starkey series 11 instruments for about three weeks. I am amazed at the improvement. For the first time I can remember I hear in “stereo”, and can tell which direction sounds are coming from. So far I am very impressed, and expect it will get better with time as my audi tweaks more things.