long-term deafness Single-Sided Deafness and Autoimmune Hearing Loss

[rogerwhitson]

Hi everyone,

I have single-sided deafness in my right ear from an autoimmune disease flare almost 20 years ago. Then about 13 years ago, I had another flare that attacked my left ear, and then another one in my left ear 3 years after that. I almost took part in one of the early single-sided deafness and CI studies in 2009, until it was determined that my left ear hadn't yet lost enough hearing. Then and now, I have a mild hearing loss in the left ear.

My hearing has been mostly stable on an immunosuppressant since then, but my doctor has recently becomed concerned that my drug might be losing its effectiveness. I haven't had any hearing attacks yet, but I have PTSD from those hearing loss episodes and I want to be proactive.

I've noticed that the FDA recently approved a Med-El CI for single-sided deafness, and I wonder if it could help me. I've been deaf in the right ear for almost 20 years, and I noticed that a few studies have noted that the length of deafness often coincides with the success of the device (or lack thereof). Have any of you gotten implanted due to an autoimmune disease? or several years after your deafness occurred? How has it turned out for you?

 

[Mary Beth]

@rogerwhitson

Welcome to HearPeers!  I am tagging @MED-EL Moderatorso they can connect you to the Med-El team for your region.

 

My right ear lost all remaining hearing following a surgery (transcanal labrynthectomy) due to Ménière’s.  It remained completely deaf for 24 years before being implanted in 2015.  It has become an amazing CI ear!  Here is a link to a captioned video of my story in case you are interested.  Wishing you the best!

 

 

[rogerwhitson]

Thank you @Mary Beth. I think I'm in luck b/c I'm moving to Spokane, WA and the ENT there seems to implant w/ Med-El. I also read something hopeful about my insurance (Regence Uniform Medical Plan) approving the device for single-sided users.

One more Q: I'm concerned that I might lose hearing in the other ear in the future. Has anyone tested whether CIs can help with the transition to deafness when it occurs over several years? I'd read that many doctors want your hearing to be stable before implanting, but I've had mild-to-moderate hearing in my left for 12 years, so I guess that's stable? Yet, the nature of my disease is that that it could return at any time.

[Mary Beth]

@rogerwhitson

That is probably a conversation to have with your CI surgeon.

 

We implanted my right side first but both of my ears qualified for CIs when I initially went through the testing.

[rogerwhitson]

that makes sense. loved your story! I'm concerned about ossification too, since it impacts about 50% of AIED patients. Lots of surgeons say to implant early because of that.

[MED-EL Moderator]

Hi Roger, thank you for sharing your experience and doubts. 

If you ever feel the need to reach out to our MED-EL team in the US these are their contact details: 

MED-EL Corporation, USA
2645 Meridian Parkway, Suite 100 | 27713 Durham
Phone 1-888-633 3524 | Fax 1-919-484-9229 | Email implants.us@medel.com

All the Best and Kind Regards, Giulia