Hi Lisa–
We have had several patients develop new or worsening sensorineural hearing loss, characterized by tinnitus. We have not seen or recognized other types of hearing loss.
For two patients, tubes were surprisingly effective–both of those had developed very early on in treatment.
For the remainder, effective treatment has been a little more elusive.
Oral corticosteroids have been effective in a small portion patients, but not in most. We have attempted holding further immunotherapy in a few patients with possible improvement. With this symptom, it is hard to tell if the tinnitus is actually better or if lifestyle modifications as a result have led to improvement in the tolerability of this symptom.
It is a tough one.
thanks for bringing this up.
Suzanne

My pt with sensorial hearing loss due to localized labrythitis non met related, is going for tubes in her ears to allow direct instillation of corticosteroid drops, if this is not helpful or if the process is taking a very long recovery, a cochlear implant is on the table for discussion. I can’t emphasize how increadibly rare this is but these are some of the cases that as we go we are learing and sharing.
I so appreciate that Suzanne you shared that you have had patients have tubes placed and it was helpful, I was able to take that anecdote & clinical experience back to my team & my patient that other patients have been through this.