Short answer · Medically reviewed summary · Last updated: 2026-04-08

A cholesteatoma is an abnormal, noncancerous skin growth that develops in the middle ear behind the eardrum, typically characterized by persistent ear drainage, hearing loss, and a feeling of fullness or pressure in the ear. While early symptoms may be subtle, the progression of a cholesteatoma can lead to significant complications, including chronic pain, dizziness (vertigo), and potential damage to the delicate structures of the ear. What are the most common symptoms of a cholesteatoma? The clinical presentation of a cholesteatoma often begins with symptoms that may be mistaken for a common ear infection.

21 people with Cholesteatoma have shared their first-person experience on this question at DiseaseMaps.

1

Which are the symptoms of Cholesteatoma?

Symptoms of Cholesteatoma reported by real patients, from the most common to the most limiting, plus a medically reviewed summary with sources.

Cholesteatoma symptoms

A cholesteatoma is an abnormal, noncancerous skin growth that develops in the middle ear behind the eardrum, typically characterized by persistent ear drainage, hearing loss, and a feeling of fullness or pressure in the ear. While early symptoms may be subtle, the progression of a cholesteatoma can lead to significant complications, including chronic pain, dizziness (vertigo), and potential damage to the delicate structures of the ear.



What are the most common symptoms of a cholesteatoma?


The clinical presentation of a cholesteatoma often begins with symptoms that may be mistaken for a common ear infection. Because a cholesteatoma creates a collection of skin cells and debris, it frequently results in a foul-smelling discharge from the ear. As the growth expands, it exerts pressure on the ossicles (the small bones of the middle ear), leading to conductive hearing loss. Patients within the DiseaseMaps.org community, which currently includes 1,133 members living with this condition, frequently report the following primary symptoms:



  • Persistent ear discharge: Often accompanied by a foul odor due to bacterial colonization within the sac.

  • Hearing impairment: A gradual or sudden decrease in hearing in the affected ear.

  • Aural fullness: A persistent sensation of pressure or "clogged" ear that does not resolve with standard decongestants.

  • Otalgia: A dull or throbbing ache located behind or inside the ear, which often intensifies at night.



How do symptoms progress as a cholesteatoma grows?


If left untreated, a cholesteatoma can grow significantly, causing the erosion of surrounding bone and tissue. In more advanced stages, the disease can affect the inner ear or the facial nerve. Patients may begin to experience vertigo, a spinning sensation caused by the involvement of the vestibular system. Furthermore, if the growth exerts pressure on the facial nerve, it may lead to weakness or partial paralysis of the facial muscles on the affected side. This progression highlights why early detection is critical for preventing permanent damage to the ear’s complex anatomy.



Which symptoms most impact daily quality of life?


The impact of a cholesteatoma on daily life is often tied to the severity of hearing loss and the presence of chronic vertigo. Hearing loss can lead to social isolation and difficulty in professional environments, while the unpredictable nature of vertigo can severely limit a patient’s mobility and confidence. The ongoing anxiety regarding ear hygiene, combined with the discomfort of chronic drainage and pain, often necessitates a multidisciplinary approach to care, involving both surgical intervention and psychological support to manage the stress of living with this chronic ear condition.



When should you seek immediate medical attention?


While all ear-related symptoms should be evaluated by an Otorhinolaryngologist (ENT specialist), certain "red flag" symptoms require urgent clinical assessment. You should seek immediate care if you experience:


  1. Sudden onset of facial muscle weakness or drooping on the side of the affected ear.

  2. Severe, debilitating vertigo that prevents you from standing or walking.

  3. High fever or severe headache, which may indicate that the cholesteatoma has caused an infection to spread beyond the middle ear.

  4. A sudden, total loss of hearing in the affected ear.




Next steps



  • Schedule an ENT consultation: If you suspect you have a cholesteatoma, request a referral to an otolaryngologist for a microscopic ear examination and potential imaging (CT scan).

  • Join the community: Connect with the 1,133 members on DiseaseMaps.org to share experiences and learn about surgical recovery pathways.

  • Prepare for surgery: Understand that because a cholesteatoma is a progressive growth, surgery is the standard and often only curative option to remove the sac and prevent recurrence.



Medical disclaimer: This content is for informational purposes only and does not constitute professional medical advice, diagnosis, or treatment; always seek the advice of your physician or qualified health provider with any questions regarding a medical condition.



References



  • NIH Genetic and Rare Diseases Information Center (GARD): Cholesteatoma Overview.

  • Orphanet: Rare diseases and orphan drugs database.

  • American Academy of Otolaryngology-Head and Neck Surgery (AAO-HNS) Clinical Guidelines.

  • DiseaseMaps.org: Patient community data and experience registry.

Author: DiseaseMaps Editorial Team
Reviewed against authoritative medical sources (NIH GARD, Orphanet, OMIM)
Last updated: 2026-04-08
Sources cited: NIH Genetic and Rare Diseases Information Center (GARD): Cholesteatoma Overview. · Orphanet: Rare diseases and orphan drugs database. · American Academy of Otolaryngology-Head and Neck Surgery (AAO-HNS) Clinical Guidelines. · DiseaseMaps.org: Patient community data and experience registry.
Medical disclaimer: This information does not substitute professional medical advice. Always consult your doctor before making health decisions.
Source: DiseaseMaps.org
22 answers
The pain, the drainage, the hearing loss, the vertigo, and depression.

Posted May 16, 2017 by mag 1100
Constant Ear Infections! Those days you turkey cant think straight, and worse, you are aware you can't...you just don't understand why much less be able to explain why to anyone else. The faint chomping sounds inside your head that accompanied your symptoms!! The gross hearing loss. The bleeding ears. The fluid that would run down your neck in your sleep and appear to leave a burn on your skin where it had drained. The fact your head hurts but it's not a headache at all. The depression from constinualky dealing with the symptoms!!

Posted May 16, 2017 by Cindy 1051
I would say severe hearing loss.

Posted May 23, 2017 by Lisa 700
Nausea, dizziness, vertigo, hearing loss and not being able to get water in my ear. Hearing loss and the vertigo would be the first I'd want to get rid of.

Posted Jul 23, 2017 by Leah 2055
My Cholesteatoma ate through to my brain, resulting in cadaver brain membrane being grafted on my brain. Then a complete ear reconstruction.
The worst thing to me is headaches, hearing loss, dizziness, ear pain.

Posted Aug 1, 2017 by Cindy 202
Foul smell discharge from the ears.

Posted Sep 7, 2017 by Sheree 500
The reoccurring ear infections. I would wake up to discharge coming from my affected ear.

Posted Sep 10, 2017 by Gina 200
Facial nerve paralisis

Posted Oct 4, 2017 by [email protected] 2000
Chronic infections (15 years, until the canal wall was taken down, C-toma #2, surgery #3). Clogged ear. Ear pain. Hearing loss. My 1st C-toma growing on my 5th cranial facial nerve; it took 5 hours to remove; it took nearly 2 years to get a DX, my face would go to sleep (similar to your foot going to sleep). Nobody other than others suffering w/C-toma who understand.

Posted Oct 18, 2017 by CTomaDue2MisDXBADdoc 3500
Repeated ear infections, fever,pain.To the advanced forms of cholesteatoma : diziness, hearing loss, pressure, pain taste loss, even meningitis could occur.

Posted Dec 10, 2017 by Adri 700
Dizzy, infections, sometimes ear pain,
Nausea

Posted Feb 27, 2018 by A. 2650
Infections
Wax build up
Hereditary

Posted Aug 16, 2018 by Katie 500
Drainage. Possible pain , reduces hearing ,vertigo, all, some , or none

Posted Sep 23, 2018 by Sandra 2900
Full feeling in ear is one.

Posted Oct 12, 2018 by glen 3500
Hearing loss and vertigo are two symptoms or the results of the damage this disease can cause. Depending on the severity this can be very difficult to live with.

Posted Mar 9, 2019 by Kim 1100
Foul smelling discharge of affected ear..dizziness,vertigo,chronic ear infection,pain, and inflammation

Posted Dec 6, 2020 by Joseph 2500
Vertigo, Nerve issues, TMJ

Posted Dec 29, 2020 by Doreen 2600
Tinnea, ear ache, smelly ear, discharge

Posted Mar 28, 2021 by Alice 600
Ear drainage, ear pain, loss of hearing

Posted May 9, 2021 by Blaiseann23 100
Hearing loss and constant sounds/sensations in the ear.

Posted Jun 25, 2021 by Samantha 250
back of ear pain (make sure it's just not your lymph nodes)
common ear infections
hearing loss
ear aches

Posted Jan 24, 2022 by read 3000

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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...
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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...
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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...
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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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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...

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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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