Hearing Loss: Come introduce yourself and connect with others

Hi, I’m new here. I’m 43, and experiencing hearing loss for about 10 years at least. My mother lost hearing at young age also. Interested in finding reasons why. I have very complicated medical profile, from autoimmune to Connective Tissue Disorder, early onset widespread bone loss in multiple joints from osteoporosis to Avascular Necrosis. Now, dealing with new Pulmonary ans Respiratory Disease and Lymphatic issues, hernia, compromised Thymic gland and more. I’ve previously had to have gallbladder and appendix out, fought liver issues, which thankfully is mostly under control. I deal with widespread pain and neuropathy, as well, as advanced degenerative disc disease that I’ve had since my early 30s, and many more back/spine issues. I believe there a probably major Neuro issues never diagnosed.
I’ve had one hip replacement due to a vascular and necrosis and the other one still needs to be replaced, but I never recovered from the first replacement, so I’m waiting on the 2nd bc my immune system crashed after hip replacement. Globulin subclass B disorder.
I believe it’s all connected somehow and searching for answers.

With all the health issues you describe, it is highly possible that medications you have taken for them could have ototoxic results. There is considerable information online. Here's a link to one of the articles posted by the National Institutes of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3138949/

Have you mentioned your acquired hearing loss to your treatment team?

You don't mention results form hearing tests. That can determine type of hearing loss

My early hearing loss was due to otosclerois in just one ear. It can run in families.
I had a simple surgery (stapedotomy) and I got my hearing back immediately.
"a disorder, sometimes hereditary, in which there is formation of new bone around the base of the stapes (bone of the middle ear), resulting in progressive hearing loss. ... The exact cause of otosclerosis is unknown. It may be passed down through families. People who have otosclerosis have an abnormal extension of sponge-like bone growing in the middle ear cavity."
Surgical procedures: A stapedectomy and a stapedotomy are both surgical procedures that treat the stapes bone in the middle ear to improve hearing loss:
Both procedures are performed through the ear canal using an operative microscope. The main difference between the two is that a stapedectomy removes the stapes bone, while a stapedotomy creates a hole in the stapes footplate

My granddaughter who is two months old failed her hearing test twice in the right ear. She went to an audiologist who said she has mild to moderate sensorineural hearing loss. Does anyone know about this and can you please explain it to me?

I have a 15-year-old son who wears hearing aids, due to receiving chemotherapy for hepatoblastoma when he was too. Happy to talk with anyone is going through any of that, and I’m also curious to know if there are other teens out there who are experiencing the same challenges that he does now.

@debbysabrina I'm surprised no one responded to you yet unless they did it on another topic page.
Sensorineural hearing loss means a loss of the hearing hair cells in the cochlea (inner ear). I believe we start with 15,000 hair cells in each ear when born in a normal ear. These cells send the vibrations that come from the middle ear to the brain. As we lose those cells, we typically start having problems understanding words clearly, especially in noisy settings. Mild to moderate isn't too serious yet and can be very successfully assisted with hearing aids and assistive listening devices like microphones. Technology is amazing nowadays and continues to improve. However, know that there is no cure (yet) for sensorineural hearing loss.
The problem with sensorineural loss is that it typically gets progressively worse and you continue losing hair cells over time. The key at such a young age is to find a good audiologist who understands childhood hearing loss. Where I live (Phila.) most people take their children to one of the large children's hospitals where there is a lot of research being done. But is needs to be treated immediately with hearing aids so that the child's learning growth is not affected. Students can have their hearing aids connected to an FM System thru Bluetooth that the teacher wears around their neck so that the teacher's voice goes directly into the child's aids. So they can perform just like any other student if they start wearing the aids now as a child. My Chapter of the Hearing Loss of America gives out a scholarship to a graduating senior every year and I am amazed at how well these students have adapted to their hearing loss through the use of aids and technology.
Good luck with it and don't hesitate to come back to this forum if you have more questions,
Mike

@nciraldo I just responded to another post on this page about the use of hearing aids and assistive technology by children. Technology is so good and getting better that young people with hearing loss of all levels can perform as well as those without hearing loss. All public schools should have an Intermediate unit that works with students with needs such as hearing loss. They can provide your son with an FM System or other system so that when the teacher speaks, their voice goes directly into your son's hearing aids. It will partly depend on what type/level of hearing loss your son has. Don't hesitate to come back to this sight if you have specific questions. I've been musing assistive technology like remote mics for over 20 years and they have been very helpful allowing me to continue functioning in many situations. My HLAA Chapter gives out a scholarship every year to a graduating high school student with hearing loss and these students are very successful managing their loss with all of their academic and athletic activities. You'd never know they had serious loss.
Mike

Thank you very much for this answer. If she has mild/moderate hearing loss in one ear does that mean she was born with fewer hair cells in her cochlea?
Also, how does one prevent further progression?
Thank you,

Thank you. We have an FM transmitter, but he more or less ruled it out a while ago — teachers keep it on too long, there are volume control issues, it’s hard to hear other things going on in class like kids talking to him, etc. I suppose we can try again, since it’s been a while. He also struggles at lunch and other places where it’s hard to filter sound.

Are you familiar with the Alexander Graham Bell Association? AGB offers some unique opportunities for children with hearing loss. https://www.guidestar.org/profile/53-0196644 Check out their website. Would your son be interested in participating in a leadership training program? The AGB LOFT program is a camp experience.

Mutual help can be very positive. These kids need the opportunity to meet one another so they can discuss their experiences and realize they are not alone.

Here is a quote from the AGB website: " Every year in the United States, more than 12,000 babies are born with hearing loss, making it the most prevalent sensory defect. More than 90% are born to parents who can hear. With hearing technology such as hearing aids and cochlear implants, nearly all of them can learn to listen, the first step in developing spoken language and literacy. With support, children with hearing loss can learn alongside peers with typical hearing and achieve an independent, self-reliant life. "