Living with Cholesteatoma. How to live with Cholesteatoma?

Can you be happy living with Cholesteatoma? What do you have to do to be happy with Cholesteatoma? Living with Cholesteatoma can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Cholesteatoma

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

Posted May 16, 2017 by mag 1100
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!

Posted May 16, 2017 by Cindy 1051
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.

Posted Jul 23, 2017 by Leah 2055
You can leave an happy normal life, but you have to visit your ENT periodicaly and check your ear, and do hearing tests

Posted Oct 4, 2017 by [email protected] 2000
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!

Posted Oct 18, 2017 by CTomaDue2MisDXBADdoc 3500
Lifestyle changes( quit smoking,avoid water inside the ear, avoiding colds etc) diet changes and regularly visits to the ENT.

Posted Dec 10, 2017 by Adri 700
You live a very normal life.
It doesn‘t effect you much.

Posted Feb 27, 2018 by A. 2650
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

Posted Sep 23, 2018 by Sandra 2900
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.

Posted Oct 12, 2018 by glen 3500

Living with Cholesteatoma

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What is the history of Cholesteatoma?

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World map of Cholesteatoma

Find people with Cholesteatoma through the map. Connect with them and share experiences. Join the Cholesteatoma community.

Stories of Cholesteatoma

Cholesteatoma stories
Hannah is my 16 year daughter.  She has had problems with her ears since she was born.  Constant trips to gp pediatric Dr for antibiotics for ear infections and get big injection on antibiotics when it wouldn't clear up. There was no bouncing on he...
Cholesteatoma stories
I call cholesteatoma the beast because it is. I started with ear infection in 2006. Then I noticed a hearing lose.Not intll 2011 did I get to a doctor who gave a proper diagnosis. Sent to Dr. Giddings in Spokane Wa. Had surgery to remove C Toma and p...
Cholesteatoma stories
Won't bore you with my dull medical history. Will say that it seems I am luckier than most, in that I have no day to day symptoms & I was able to swim, snorkel & even dive in some beautiful oceans before the disease was diagnosed. I felt fearful & ve...
Cholesteatoma stories
Case history: 2004 grommet l.s. (Szent István Hospital) June, October 2005: deviacio septi nasi, sinusitis ethmoidalis chr. (Szent István Hospital) 2006: mastoidectomia, atticoantrotomia, tympanoplastica. (MÁV Hospital) January 2008: retympano...
Cholesteatoma stories
My 12 year old had his first surgery 2 weeks ago. ( 9/7/2016) after discovering he had it in feb. No history of ear infections until December 15. How're had to have grommets in 3 years ago due to glue ear. From what I understand this is just the star...

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Hi, I would really like some info regarding laser treatment for ctoma. I know that this is available in the UK. Does anyone know if this is available in Ireland. Thanks

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