Q&A about Cholesteatoma with Mayo Clinic expert Dr. Breen

I am curious to know more about differential diagnosis of cholesteatoma specifically a condition that can present with similar imaging and clinical features. Can you speak to differentials of EGPA-related granulomas. Do you recommend a particular area of specialty for diagnosis and treatment of granulomas vs cholesteatomas?

Have you or a loved one experienced a cholesteatoma -- a growth behind your eardrum (tympanic membrane)?

@genuinekim @funkynotes @judysmayo @irene5 @melrod1030 @dserro @lkaton9 @julieo4 @ranchomonk @joanne58 @twgonzales @bjhines @gfisher9 @beonsonn @531943rose @earcho25 @jbhistory @charlene1961 @imallears @gordy6898p @pamh480 @irishpat70 I'm inviting you to join Dr. Joseph Breen, a neurotologist (ear surgeon) specializing in cholesteatoma and otosclerosis at Mayo Clinic in this Q&A discussion.

See details here: https://connect.mayoclinic.org/event/qa-about-cholesteatoma-with-mayo-clinic-expert-dr-breen/

Post your questions in the comments below. Dr. Breen will reply to your posts on May 21 from 9-10 am ET.

What do you want to ask Dr. Breen?

I had 2 surgeries for removal of cholesteamomas in both my ears with reconstruction of inner ear with implants in both ears within 2 years. I know have severe dysgeusia however a scan was done and nerves were not severed . Blood tests were done and every possible reason was addressed but the cause has it been determined. I am 76 years old and have obviously had the growths for many years prior to their discovery. Is it at all possible that the cholesteatoma growths caused this condition over time? Would appreciate your thoughts on this . Thank you in advance

I have had 3 surgeries for cholesteatoma. The first in 1984 in my right ear. 2 small hearing bones, the eardrum and the disease were removed. 6 months later the surgeon grafted a prosthesis. The prosthesis had to be replaced 4 times. Then in 2008 after an unsuccessful stapedectomy in my left ear by a new surgeon, a third surgeon went in and removed the cholesteatoma which had spread to the skull and my entire middle ear canal in 2010. I was left deaf in my left ear. In 2012 I had surgery to place a titanium rod behind my left ear and began using a Ponto hearing device. In 2021 a cholesteatoma was found in my right ear again. I had a surgery to remove it.
I have relocated to Phoenix near one of my children. I am a patient at Mayo now. I have regular checkups. How do I prevent cholesteatomas from growing again? I dread having more ear surgery. I’ve had 10 so far.

Doug McLeod

I am 82 yrs old and have had many medical issues:Past summary: Dates close. Kidney stones X2,1970/1994**Burst Appendix,1978**Groin Hernia,1988**Radical Prostatectomy, 2005- did not metastasize,PSA’s OK**Shingles,2013**Arm Cyst,2010**Polymialgia Rheumatica, 2014, Hip replacement 2022, still aches - MRI shows no problems. Dr. said could be Peripheral Neuropathy??

Going back I had severe ear pressure problems about 40 yrs ago. Several ENTs found nothing. Finally an older ENT at a military hospital knew it as Rice Bran Ear wax ( more known to Asians) had me soak with glycerine and peroxide. Then was able to peel it off, resolving the problem. Now I have been having ear pressure problems again for about 4 years this episode. Thinking it was the same problem I again went to several ENTs finding nothing with the pressure getting worse. Having dry eyes & mouth one of the ENTs suggested I could have Sjogrens Disease. Initial SS-A etc. blood tests were negative. My Dry eyes & mouth are worse. Dry eyes have been substantiated by a Dry eye specialist. I have also developed many more Sjogrens symptoms: Arthritis muscle/joint pain, Fatigue, Peripheral neuropathy (esp. in feet), Abdominal bloating discomfort, Poor sleep.
I was finally sent to a Rheumatologist who did a short exam and ordered blood tests which were negative. She dismissed me as not having any auto immune issues and my problem was only old age. Since then my symptoms are getting worse. I have read quite a bit about Seronegative tests. Sjogrens Societies and other reputable clinics say Seronegative patients still need to be treated. Back to the ear issue. I did more research myself and came up with the possibility of Autoimmune inner ear disease. I have a referral to a new ENT with good looking references (still waiting after 5-6 months). I found that AIED could be on its own or associated with another Autoimmune disease. The pressure is worse making it very hard to cope with getting unbalanced, dizzy feeling and continual nasal congestion with headaches.

Can you substantiate that the above is possible and needs treatment despite the negative tests or could there be other reasons for these symptoms.

Cheers, Doug Mc Leod

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