Hearing Loss: Come introduce yourself and connect with others

@jfobes You are exactly right about most doctors. There are a few who realize that sometimes patients have some valuable personal knowledge. My orthopedic doctor is like that. I had a post-TKR problem and had some input from other post-transplant patients here on Connect, but my transplant team would not say it was a possibility. My orthopedic doctor actually said that sometimes patients experiences are valid even when science doesn’t support them!
I think many of us have experiences beyond the typical and doctors have to accept that.
JK

Hi! I am approaching my 40s, and have had hearing loss since I was 15. I am totally deaf in my right ear and have a significant hearing loss in my left ear. Over the years, it has gotten worse. I loss my hearing after having ear surgeries in both ears for my genetic disorder, NFII, or Neurofibromatosis Type II. I am hoping that one day I will not end up deaf.

I know its tough but try not to focus on what ifs. Protect your hearing as much as your can. Do you have a good support system?

I agree with Johnny3 about the value of a good support system. Check out the website of the Hearing Loss Association of America, HLAA, to see if there's a chapter near you. The Association of Late Deafened Adults (ALDA) is also a good resource. hearingloss.org and https://alda.org/.

Hi @samt Welcome to Connect.
It must have been tough to lose a lot of your hearing during your teen years. My daughter started wearing hearing aids when she was 4 and was fine with them until she hit those teen years when kids can be cruel. For a long time she only wore one but when she went to college she resumed wearing two knowing she really needed to hear everything in class. We never knew what caused her loss but were told that’s true with a large percentage of people.

I hope that you don’t end up deaf too. That’s something that scares me also since my hearing seems to have deteriorated a lot. I didn’t start wearing HAs until I was in my 50s, 15 years ago. Are you wearing HAs or a CI?
JK

Thanks, @katherinekatherinebouton. I am familiar with HLAA, and usually go to their chapter meetings. I will look up ALDA. I think there is also a NF2 chapter near me too, so I will look them up as well. Thanks!

Hi @contentandwell. I am sorry to hear about both you and your daughter. I remember the hard times I had in school...I had to ask the teacher if I could sit up close, as well as hid my hearing aids with my hair. But at least I had better hearing then as compared to now.

I have always used hearing aids. I am not a candidate for cochlear implants, since the hairs in cochlea are dead. But, technology is changing, and maybe one day I will be a candidate.

If unaware, you should also consider following Katherine Bouton's blog(she responded to your post if you noticed). Be well.

Thankssssss, @samt My daughter is 37 now and of course completely accepting of her hearing loss. Her loss has been quite stable for a long time now. She wears ReSounds and I wear Oticon Opn 1 hearing aids. She loves hers, but our hearing problems are quite different from each other.
I have a hearing test next month and I have heard more and more about the advantage of Real Ear Measurement which is something they have never done at my audiologist. I was thinking about changing audiologist to one who does but I called mine first and they can do it, but they generally only do it on children! I have no idea why they would do that, but they have scheduled it for me when I go in. I am hoping that they may be able to program my HAs in a way that will better help me.
JK

I had a sudden loss of hearing a little over four years ago when I was 69. Prior to that, I had a second upper molar extraction that resulted in a sinus exposure. I was on Cipro for weeks after that to prevent infection . It finally healed without further surgery. The oral surgeon and ENT specialists do not think this sudden hearing loss is not relayed to this , but the more I read about Cipro the more I think there is a connection.
My hearing prior to this was great. Never had tinnitus or fullness in my ears. I simply woke up with deafening, roaring tinnitus in my left ear. Also was noise intolerant and by later that afternoon was so dizzy I could not walk and would vomit with the least change of position . Saw my PCP early the next morning who gave me an injection for nausea ( didn’t work) n got an appointment to see an ENT doctor within two days who told me I had Ménière’s Disease. Was started on a diuretic n oral dose of tapering prednisone. Took a week to see an audiologist who told me that the extent and frequency of hearing loss was not what you would expect to see with Ménière’s as I was legally deaf in that ear. At that point, I self referred to a specialist at Vanderbilt in Nashville, but had to wait six additional weeks. MRI was negative and they told me that I should have come there immediately as sudden loss of hearing is a medical emergency. Had an inner ear steroid perfusion and began vestibular therapy. Used a walker due to balance, vertigo, visual difficulties and overwhelming brain fog and fatigue. With therapy I learned to visually “spot” on objects when moving which helped to quiet down the visual chaos I had in stores and busy environments. Also wore ear plugs in noisy places. Was told I had vestibular migraines but always felt that my brain never accommodated with therapy. Eventually changed specialists as had no response with medications that were prescribed by a neurologist.
Have had two other sessions of vestibular therapy and three inner ear gentamicin perfusions. Can now walk with hiking sticks for balance. Still find shopping , riding in the car and reading difficult with visual effects lingering . Vertigo goes off the charts in noisy environments ( Tullio’s) . Have cross over hearing aids that I have infrequently worn as I continue to be noise intolerant. Otoneurotologist told me a year ago, he is now calling this Ménière’s Disease. Hearing continues to worsen and I now have tinnitus and inner ear fullness in both ears.
Socially ok in quiet places and always try to sit in a booth or corner to help with hearing. Ask restaurants to turn the music down if it is too loud and remarkably they usually comply. Stay away from places that are too acoustically alive. Have not been able drive since this started. Thankfully have a most loving husband, family n friends to keep me active and going. It would be so easy just to hibernate on a good day.
So glad to have discovered this site to share and learn what works for others.
Verti73