Living with Cholesteatoma. How to live with Cholesteatoma?

You will 110% die without a cholesteotoma removal. So plz have it removed ASAP once you have the diagnosis.

The surgery!! Otherwise you live with it and live with it and live with it! It becomes more and more intense and more and more scary! Mine had destroyed 5 areas inside my head and infiltrating my brain by the time it was finally diagnosed!

Of course you can be happy living with it, at times it can be very difficult and often times people don't understand the disease. I think you just have to keep your head up and reach out to those willing to listen.

You can leave an happy normal life, but you have to visit your ENT periodicaly and check your ear, and do hearing tests

Truthfully, I've had it 20 years. All due to a BAD HMO doc in 1997! Yes, I'm still anger I suppose; which is odd because it goes against my spiritual beliefs. You can be happy, if you don't focus on how it changed your life. I was DX w/my 1st at 35. I knew life w/o it. I've had 3 removed. I had a Canal Wall Down Tympanomastoidectomy in 2012. I have constant LOUD tinnitus and a 50% hearing loss in the surgical ear. I'm now trying hearing aids. A BAHA may be necessary. I am driven nuts when it is about to rain and my head becomes a natural barometer. If it wasn't this, it would be something else....so you just have to DEAL with it! If you have chronic infections (as I did for 15 years) I'd suggest getting the canal wall removed. It did take my hearing down from a 75% loss to 50% loss, and added the constant hissing....honestly, this is FAR better than being on antibiotic at least 6X a year and ALL the complications of ear infections. They are messy and not fun!

Lifestyle changes( quit smoking,avoid water inside the ear, avoiding colds etc) diet changes and regularly visits to the ENT.

You live a very normal life.
It doesn‘t effect you much.

One day at a time. Everyone recovers at a different rate and the results are different with every one. Follow doctor instructions and beaware of changes you feel are suspicious

Accept that you have it and there is no known cure at this time. Have faith that the day will come when this disease will be less invasively treated and the lifestyle of sufferers improved greatly.

I read lips and have to say the what frequently due to hearing loss..also pain is an issue for some.

I don't have an answer as to how to be happy with Cholesteatoma. This disease sucks. It's a statement of fact. It can be debilatating. You simply have to enjoy the good breaks when you are symptom free and push through the times when you are experiencing symptoms and take each day one at a time.

just be yourself and try to avoid ocean water/lake water and always where earplugs when going in water