I’m wanting to connect with anyone who has had a vestibular implant.
Hi Jan,
I had a vestibular implant in February of 2024. I qualified for a clinical trial at Johns Hopkins. I was diagnosed with bilateral loss of labyrinthine function, due to receiving IV gentamicin in October of 2023. I also have pretty severe oscillopsia. The implant I received is made by Labyrinth Devices and is a modified cochlear implant. I'd be happy to share anything you want to know. It has definitely helped quite a bit, but it is an improvement, not a cure.
Deb in N TX
Hi Jan,
I had a vestibular implant in February of 2024. I qualified for a clinical trial at Johns Hopkins. I was diagnosed with bilateral loss of labyrinthine function, due to receiving IV gentamicin in October of 2023. I also have pretty severe oscillopsia. The implant I received is made by Labyrinth Devices and is a modified cochlear implant. I'd be happy to share anything you want to know. It has definitely helped quite a bit, but it is an improvement, not a cure. fnaf
Deb in N TX
How has the vestibular implant affected your daily life and activities since you received it, especially in relation to managing oscillopsia?
The implant has helped a lot with the balance issues. I am able to walk normally and have seen videos of other clinical subjects running and jumping rope after receiving the implant. For the first year, I flew to Baltimore often, for testing and adjustments to the signals the device sends to the vestibular nerve. I did lose much of the hearing in my implanted ear, but that is not the case for everyone. As for the oscillopsia, it is better, but not gone. I am able to drive the familiar roads in my small TX town, but would not attempt freeway driving or city driving. I can walk on my treadmill for exercise, and even care for my chickens with no problem. I still don't like grocery stores, because the narrow aisles and people moving toward me, in addition to the fluorescent lighting, seems to exacerbate the oscillopsia. I usually order groceries to be delivered or give my husband a list and he does the shopping. If you search vestibular implant clinical trials, you can go to a page that shows videos of the first 6-10 participants completing tasks, before the implant and after. Hope that helps!
Deb in N TX
