This sounds like the right path; keep in mind, however, that sometimes these tests can come out within the "normal" range....please look up that article (by Sperling et. al.) regarding CSF flow dynamics and hearing loss. Your daughter may benefit from a CSF flow study called a CINE MRI. This can reveal if there's any abnormality in her cerebral spinal fluid flow.
Thank you for your feedback. I consulted her audiologist who agrees that this MRI finding may be relevant. She was have cortical auditory evoked testing next week and if it shows concern, then we will know it is a brain issue versus ear.
I hope my experience helps...I have had hearing/ear issues all my life. My hearing loss developed slowly over time -- first signs were frequent ear infections as a child and eustatian tube dysfunction with tinnitus off and on, but short-lived. This progressed to pulsitile tinnitus in my left ear in my 30s which threw up a "red flag" to my ENT. A subsequent MRA revealed nothing except "a weird turn in your arteries" in the brain. I was sent on my way and told to "ignore" the sound I was hearing in my ear (my heart beating, blood flowing, and tones like on a hearing test). So I did what I was told. BIG MISTAKE. This pulsitile tinnitus progressed to constant high frequency tinnitus and hearing loss in the left ear...so much so that I now wear a hearing aide because I've lost quite a bit of hearing in the speech and high frequency ranges. Losing the hearing, in combination with the headaches, is what led me back to the MD last year and, finally, a diagnosis of Chiari 1 (6 mm herniation with retroflexed odontoid process). Docs at TCI have told me that my hearing loss, no matter what any other doc has told me, COULD BE related to my Chiari. I refer you to an article by Sperling et al, in the late 90s that described a link between high frequency hearing loss and Chiari, due to disturbances in CSF flow. I URGE YOU, find a Chiari specialist that deals with the big picture and considers how other factors may be affecting your daughter's hearing. ENTs will often use only the tools in their tool box, and will not consider thinking outside the box. I wish I would have been more persistant in insisting that my ENT follow through more thoroughly when I was in my 30s...I may have been able to get a dx sooner and save more of my hearing. A good audiologist can monitor your daughter's hearing and get a baseline on her inner ear and cochlear function. Your daughter is young....too young to lose any more hearing. I sincerely hope this helps.
Hi and welcome to the Chiari forum.
May I ask, did they ever mention hydrocephalus when she was originally dx'd? The enlarged head indicates that possibility, and could be y she has low lying tonsils....and could explain the symptoms she has been having.
Chiari and ICP (Inter cranial Hypertension) both can affect hearing, and to pursue this with a NL may be a good way to go but, u also may want a true chiari specialist to review the MRI and all her other tests to help guide u as to the next step.
We do have a list of drs to aid in ur research of dr- research all u choose to see, and be advised this list is not meant as a referral.