Cholesteatoma
Hearing loss doesn’t define or disempower who you are. Instead, it gives you a unique way of experiencing the world that is yours only - Priscila Soares
image by: Ayush Speech and Hearing Clinic
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Fiona’s story
Like many people with this condition, I had several ear infections as a child which seemed to calm down as I grew. The first indication that there might be a problem was a lump behind my right ear. It felt like a swollen gland. There was some tenderness and a general ache. That was back in 2003 around the time my mother was undergoing a mastectomy. It niggled but I had more important things to worry about. The lump never really went down and pretty soon the headaches commenced. Initially they were predictable. I would get a pulsating sensation in my right eye and a migraine type headache with nausea and dizziness would follow. They would typically last for 3 days and seemed to roughly happen…
Resources
Giving Imagery to an Invisible Disability
Cholesteatoma, a destructive skin growth that develops in the middle ear and typically requires removal, was the catalyst for Priscila’s hearing loss. She first received a cholesteatoma diagnosis for her right ear at 17, which she believes was the result of many ear infections as a younger child.
Living with cholesteatoma, a tumour that destroys the bones in your ear
I was seeing specialists but kept being told they were just ear infections until one day after about a year of going back and forth a scan showed I had Cholesteatoma, a tumour like growth in the ear.
My Cholesteatoma Journey…so far…
From as far back as I can remember (about 5 or 6yrs old) my ears have felt ‘strange’. I can remember the pain of frequent ear infections and rocking to soothe myself as a child with offensive discharge oozing from my ears.
Cholesteatoma 101
Cholesteatoma growth and its effects develop over time. The longer one waits for treatment, the more serious that symptoms can become.
Cholesteatoma and Its Management
Cholesteatoma is probably one of the very few conditions in the body with as many controversies regarding its name, definition, genesis and pathology. It is essentially a benign tumour, which pushes away the middle ear cleft mucosa and any tissues that get in its way.
Cholesteatoma and Otosclerosis: Two slowly progressive causes of hearing loss treatable through corrective surgery
Cholesteatoma is a unique disease of the ear in which a skin cyst grows into the middle ear and mastoid. The cyst is not cancerous but can erode tissue and cause destruction of the ear.
Megan's cholesteatoma
When Maggie and Peter’s daughter Megan was diagnosed with cholesteatoma it was a completely new concept for the family. They soon found out how little others knew about it too…
Fiona’s story
Like many people with this condition, I had several ear infections as a child which seemed to calm down as I grew. The first indication that there might be a problem was a lump behind my right ear. It felt like a swollen gland.
Cholesteatoma Support & Awareness Group
Page dedicated to the hidden disease.
International Cholesteatoma Association
Cholesteatoma affects many people around the world. We are a small group of volunteers helping to unite people affected by this disease. This website has been created to support functions of the not-for-profit organisation, International Cholesteatoma Association, formed in March 2016.
Vestibular Disorders Association
Over time, the cholesteatoma can increase in size and destroy the surrounding delicate bones of the middle ear. Hearing loss, dizziness, and facial muscle paralysis are rare but can result from continued cholesteatoma growth.
All in My Head - Cholesteatoma Blog
This page is designed to offer an insight into what it is like to live with cholesteatoma - a condition that is often refered to as the hidden disease.
My Lucky Years
Through my art, I want people to understand the view of a person with an invisible disability. I know now that having a disability such as hearing loss doesn’t define you, but instead, it gives you a unique way of experiencing the world.
Dizziness-and-Balance.com
Cholesteatomas are tumor like growths in the middle ear (see above). They are generally formed from the skin cells on the outside of the eardrum, that have become folded into the middle ear as a result of an ear infection with a perforation of the ear drum. Some are also congenital due to pockets of tissue located in the middle ear.
GARD
Cholesteatoma is an abnormal growth of skin in the middle ear behind the eardrum. It can be congenital (present from birth), but it more commonly occurs as a complication of chronic ear infections. Individuals with this condition usually experience a painless discharge from the ear
Patient
Cholesteatoma is the name given to a collection of skin cells deep in the ear that form a pearly-white greasy-looking lump deep in the ear, right up in the top of the eardrum (the tympanic membrane).
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