Hearing Loss: Come introduce yourself and connect with others

tonyinmi (@tonyinmi) AND Content... How can we Advocate ? ARE WE LOOKING FOR MEDICARE TO COVER SOME or al OF THE COST.? Hearing aids r important CAUSE HEARING LOSS CONTRIBUTES TO ALZ!

Hi everyone, I am posting here in the hopes that someone has experienced something similar and can provide some guidance. My 11 year old daughter started complaining last December that she couldn't hear. Her step mother took her to an ENT to have her hearing tested. According to her stepmother, the ENT that tested her hearing said she had normal hearing and it was probably something psychological. (Looking back now, I believe the ENT probably said it was neurological and her stepmother confused the 2). Anyway, so we took her to a pyschologist. We explained what was going on and she was evaluated over a period of time. The psychologist diagnosed her with mild anxiety and said that she had no other pyschology related issues that would cause her to believe she had hearing loss. A few months went by, and we noticed her hearing/understanding growing worse. We decided to have her hearing tested again. Her OAE's were normal but her acoustic reflex was missing. We were referred to Texas Children's for an ABR. The ABR came back abnormal and the audiologist that performed the ABR informed us that my daughter had auditory neuropathy. We were immediately seen by the ENT who performed some balance tests, etc and then sent my daughter for an emergency MRI. The MRI came back clear. We were told it was extremely rare for kids to develop auditory neuropathy at my daughter's age. The ENT placed her on steroids for 2 months. He believed she had an autoimmune disorder that was causing the hearing issues. After a month, she was placed on methotrexate to address the autoimmune. However, blood test after blood test came back normal. Even though the blood tests were normal, the ENT still wanted her treated for an autoimmune disease. I decided to seek a second opinion. We saw a second audiologist. They have since reviewed my daughter's wave forms and are questioning the auditory neuropathy diagnosis even though there is for sure something going on. She typically gets normal hearing on her hearing tests but on her "bad hearing days" as we like to call them, she has a really hard time understanding what is being said. She doesn't exactly check all the boxes for auditory processing though because she doesn't always get "normal" on her hearing tests. But they are saying she should never get "normal" on her hearing tests with auditory neuropathy.

Her father and I have a theory that this may somehow be linked to hormones. All of this started about the time she started her period. For the past 2 months, I have been tracking her good hearing days and bad hearing days in conjunction with her menstrual cycle. Her worst hearing days are always during the beginning of her cycle, when her estrogen is at its lowest. I have found several medical journals that discuss the role estrogen plays on hearing; however, every doctor I have brought this theory up with brushes it off. Her father and I would like to find a doctor that will help us investigate our theory more objectively. Right now, it's pretty subjective as we are just using our best judgment for her hearing/understanding levels. I wanted to post here to see if anyone else has experienced hormone related hearing loss or an issue similar to what I have described above or if they know of any doctors/programs that are willing to look into it. The doctors seem to be leading us toward cochlear implants. My concern is that my daugher has more good hearing days than bad hearing days and on her really good days her hearing/understanding is probably in the 80-90% range. I would hate to remove her cochlea and remove all hearing, especially since she does sometimes hear so well.

Thanks for taking the time to read our story!

@lioness That's great that you were able to find a less expensive alternative. I always have hearing aid insurance that will replace my HAs if necessary. The type of thing you are mentioning, the EARGOs, would not help with severe hearing losses - mine is severe in one ear and profound in the other. I'm glad that it is helping your tinnitus too.

@cherriann Have you asked your audiologist if "in the ear" would be more help with tinnitus? If you have a good audiologist she/he should be able to provide the best guidance.

@tonyinmi I am sure the Hearing Aid Association of America is advocating for coverage. I hear that's a great group but they have no chapters close to me at all.

@scottk Isn't it great to find a professional that you really like? I'd be interested in hearing what the apps she recommended are.

@katyrae83 Your daughter's situation sounds extremely complex and unusual. I have very little to say since I too am just a hearing disabled person, but I found out recently that your blood pressure can affect your hearing! I don't remember if it gets worse when your BP is high, or the opposite. That being the case with BP, it does not surprise me that hormones can also affect hearing. I would definitely want to hear opinions from two or three very highly regarded professionals before doing something that is permanent, like a CI.

By the way, as we all know, hearing aids are quite costly. For any of you who are in the New City Area or in the Fort Lauderdale, Florida areas, the Center for Hearing and Communications (CHC) provides hearing aids on a sliding scale based on income. My daughter used to work for them in NYC and there's a great audiologist there, Ellen LaFargue. I would highly recommend her. You can also go there if you are not in need of financial assistance.
JK

@lioness Who is your HA insurance through? Thanks in advance...

Hi, @whatdidyousaynaz I think that message was meant for me. My insurance is through Oticon. The insurance was part of my purchase price and lasts for three years. It will be up in March and I can then renew it through the audiologist. I think she said it would be about $200 per HA.
JK

@contentandwell yes, thank you... That's great news! Thanks again...

Katyrae83: This is really, really important! I fear that your daughter has Meniere's Disease, although she is young to be have serious problems with it. YES--hormone levels can be a huge trigger for those with Meniere's. I've probably had Meniere's since I was quite young, but it wasn't diagnosed until I quit taking birth control pills (I.e., hormones) in my early 40s. I had had earlier episodes of classic Meniere's crisis at various times when I hadn't been taking hormones, but it had never been diagnosed. Soon after I quit taking hormones, I began to have crises within a day of the initial day of each period, and they grew worse and worse every month for eight, until I was on the floor, lying in a pool of vomit beneath the toilet--not a pretty sight at all! My primary doc, who often fished with me, feared the worst, prescribed strong birth control pills for three months as a trial. After the first month, I had no problems. At that point, Meniere's was primarily a balance/vertigo problem with hearing secondary. Due to my age (40s) it was believed that I could not take hormones, so my doc and I tried various supposedly "safe" HRT (hormone replacement therapy) over the next 3½ years, none of which prevented the 12-15 hour bouts of severe vertigo with continual vomiting. Great weight loss program, as I went from my normal 120 down to less than 90 at one point. At that time, the Meniere's was unilateral, i.e., only in my right ear, and I lost all useful hearing in that ear over a period of about six months.

Good news is that we also occasionally fished with an OB/Gyn from Houston, part of a huge practice. You are fortunate in that HRT is viewed in a much better light in Texas than it is in Oregon. That doc "ordered" me to go to my primary and demand a properly-balanced form of much stronger HRT. Fortunately, my primary doc agreed. Within a month, I quit having crises (had been having them as often as 3X a week). I was designing and editing a book about Meniere's Disease for VEDA (Vestibular Disorders Assn.) at the time, and the editor, also a "vestib," sent me instructions on how to do VRT (vestibular rehab) via e-mail. I was soon wading rivers, climbing ladders, hiking, leading a normal life. That was over 30 years ago, and I still do VRT every day. Over time, my so-called "good" ear had increasing age-related deafness, but I was able to get by with a combo of lip reading and guessing.

I started to go bilateral five years ago, but only began to have serious problems last May. This time, perhaps partly due to the daily VRT, the big problem is hearing. With Meniere's, it's not that you can't hear at all but that you hear far less during bad days and what you do hear is so distorted that you cannot understand words. You can see and even hear sound from someone speaking, but what they're saying is a total mystery. The business of fluctuation (good days vs. bad days), distortion, recruitment, and tinnitus ensure that you feel totally crazy sometimes, as well as royally frustrated because you can't understand now when you could a couple of hours ago. I now have constant tinnitus in both ears, different noise in each. I can't hear environmental sounds around me, like whether or not I've already turned the car on. I used to be a musician, but gave that up over 30 years ago, due to recruitment (where loud, sharp sounds simply slice through your head in a very painful way) and my inability to hear other instruments well enough to perform in an ensemble or orchestra.

THE way to get a hearing problem diagnosed is to go to a neurotologist. ENTs simply don't have the training. The one I saw early on simply patted my hand and said, "Now, now, dearie, just quit your silly job, stay home in bed, and take Valium." My "silly job" was sole support of my family at the time, with one kid in college, so that wasn't an option, even if I had considered his great advice for even one minute. The "dearie" meant I wanted to slap him upside the head! FWIW, valium and other drugs did zip to conquer the vertigo for me, only made the situation worse.

I'm certainly not a doc, but have studied Meniere's for almost 40 years. Although I immediately noticed that a large percentage of those who sought help from VEDA when I first found that organization were women in their 40s, most docs refuse to believe that there's a connection between hormones and bad days. Many of us with Meniere's believe that it actually is NOT a single disease but a collection of hard-to-diagnose diseases with different "triggers" that cause especial misery. The reason that your daughter had an MRI is because the one sure thing to omit is the possibility of an acoustic neuroma--the MRI proved that one is not present.

Please don't do anything that can't be reversed, like a CI, until you've learned what's actually wrong. I strongly suspect Meniere's, which is a very grim diagnosis because there is no cure, just ways to learn to live with it. Try to understand and be patient when she has bad days. Trust me, she's having a far worse time than you are! For example, my daughter and son-in-law came here for Christmas Eve and again early Christmas Day. It was a special time that I had looked forward to, but, unfortunately, I was having a really bad day and was relegated to sitting in the living room watching my husband, daughter, and son-in-law converse. Then, later that evening, some hearing returned. The next morning, I could hear somewhat (not a really good day but much better), so I was able to enjoy her visit for a couple of hours. However, later that day I had a mild vertigo crisis, meaning that my husband had leftovers for Christmas dinner and I spent the evening clutching a trash bag. Learning how to vomit in public in a "ladylike" manner is just one of the challenges!

You may contact me directly at through a private message. Good luck!

@mari There are a lot of ways to advocate. To advocate for ourselves, request Hearing Assistive Technology (HAT) when you go to a venue. If the venue has something, use it and thank them for it. If they do not have HAT, offer suggestions on what is available and where they can "hear" it in action. Another thing would be to share your experiences. For a person that is new to hearing loss, there is so much to learn. To help on a larger scale, attend your state legislators coffees or town halls, if they have them. Even if they don't do outreach, contact them with the issues that affect you, as a person with hearing loss. If you get more personal with them, they may even contact you when a bill comes up that relates to hearing loss. The more you get involved with the players in the hearing loss world, the easier it is to try to stay on top of what's happening. I suggest you join Hearing Loss Association of America (www.hearingloss.org). That organization approaches Congress and are only as strong as the number of its members. They are more effective if they can say they represent ALL the 48 million in this country with hearing loss but they can only say they represent the numbers that are their members.
I'm sure there are other ways to advocate so others may chime in with some good ideas.
Tony in Michigan

@katyrae83 This is interesting. I hope you can find an ENT or Otologist that can get to the bottom of your daughter's problem. I do not have knowledge on her condition but have to question the effectiveness of a cochlear implant, especially if the problem is neurological. Please keep us updated on her treatment.
Tony in Michigan

@cherriann Ive only had them a week but do feel that it had quieted my tinnitus when I wear them but when I take them out I notice my tinnitus again. Since Im on S.S. I dont have the funds to buy another 3,000.00 set so this has been my answer for me but ask your audiologist what his opinion is as for me Im happy with them