My Daughter Was Diagnosed with What?
I found myself not able to fall sleep again last night. I tossed and turned with thoughts of my daughter racing through my mind. She looks at me as her protector, the superhero dad who won't let anything bad happen to her. I feel powerless in her current struggle and pray the talented doctors and the U of M can provide some clear answers on how to make her better.
For those of you who tune in weekday mornings, you know she's been going through some problems with her hearing. Its nothing new. This is something we've been aware of since birth. We didn't know the extent of it until recently when after two weeks of tests including an MRI and CT Scan, she was diagnosed with Mondini malformation.
Like me, your saying to yourself..."what's Mondini malformation?" Here's what I found after doing some research, according to the site Radiepaedia.
Mondini malformation is an inner ear abnormality, and is often used inappropriately to describe any cochlear abnormality, rather than a specific type of cochlear hypoplasia. Thus, most would favour not using the term, except perhaps in cases where the findings exactly match those described by Mondini.
Patients have sensorineural hearing loss, which is usually bilateral As the basal turn of the cochlea is intact, high frequency hearing is usually preserved. Additionally complete or partial absence of the normal interscalar septum is also present, which can now be demonstrated on high resolution MRI.
Treatment and prognosis
Hearing can be improved by implantation of multi channel cochlear implant.
There is an increased risk of: meningitis and perilymphatic fistula.
In the simplest terms, she has partial hearing loss and it could cause her to go deaf altogether. We have to do everything we can to protect her good ear (the right one) and pray for answers soon from the specialist on the course of action moving forward. Macy is a very strong and positive young lady. Its her mom and me that struggle with this diagnosis. Lots of tears have been shed since receiving that phone call.
A huge thanks to Dr. Eileen Dauer for being so thorough and compassionate. She calls, texts and emails us constantly to check in. We can't thank her and the team at St. Cloud ENT enough.