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
Hi Deb, thanks for sharing your experience, it's really helpful to hear what the process has been like. I'm glad to hear the implant has made walking and daily activities easier, even if some challenges remain. Did your doctors mention how long it might take for the brain to fully adjust? Also, was the hearing loss in your implanted ear something they prepared you for in advance?
