Author Topic: Very complex patient with OI. Could I have an AN?  (Read 828 times)


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Very complex patient with OI. Could I have an AN?
« on: November 12, 2019, 01:46:09 pm »
Hi all,

Thanks in advance for reading. I'm a 24 year old, otherwise healthy male with osteogenesis imperfecta (brittle bone disease) type III. My condition often causes conductive hearing loss due to otosclerosis which I have experienced in my left ear. In my right ear, about two years ago, I had a sudden hearing loss that occurred at night whilst awake. It resulted in a moderate-severe conductive hearing loss. We attributed it to the OI, however about a year after that, I experienced a bout of BPPV that kept me dizzy during my college finals week during the fall semester of 2018. I was positive for the Dix hallpike maneuver on the right side. I've never had that before and it was very scary!

After the symptoms got better, they never fully resolved. I was subsequently diagnosed with convergence insufficiency in my eyes. Over the past couple months, new symptoms have appeared. I am experiencing transient facial burning, along with a mild uncomfortable sensation on the right side of my tongue. It was intermittent, but this week has the tongue and jaw sensation has become constant. It is not numb, but it does feel uncomfortable, and it is quite difficult for me to describe.

My ENT ordered a VNG last month, which came back "normal", so he referred me to a neurologist. The neurologist believes that since my face is not yet paralyzed, and a limited number of the facial nerves are affected, I should just watch and wait. I am not satisfied with this answer as the symptoms affect my quality of life. My fiancee and I are getting married in a short period of time, and I have often been not as present for her as I would like. Because I already have a disability my doctors do not want to pursue a diagnosis aggressively. Obviously it's a very frustrating situation.

Do you think my symptoms warrant an MRI? As part of my bone condition I receive yearly CT scans of my C-spine without contrast, but I am afraid this would not show an AN.

Are my concerns warranted at all?

Thanks so much in advance.

Greece Lover

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Re: Very complex patient with OI. Could I have an AN?
« Reply #1 on: November 14, 2019, 02:48:53 pm »
I'm obviously not a doctor, but my sense is that most of the symptoms you discuss are not generally the initial presenting symptoms that lead to discovery of an AN. 
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!