Hearing Loss: Come introduce yourself and connect with others

Reply to Dean re balance: You can regain much of the balance you lost via VRT (vestibular rehab therapy). Today there are VRT specialists in many places. You need to learn to use your third balance system, proprioception, the feeling you get from your entire body, esp. your feet, as you move. I lived through four years of hell with unilateral Meniere's Disease on my right side, learned what my trigger is and got MD under control, then started VRT. At that time there were only a handful of VRT therapists in the world, so I learned via e-mail and practiced it every day for nearly 40 years. I was able to do extremely active hiking and wading, climb ladders, etc. almost as easily as a "norm." Then, a year ago, I went bilateral. Suddenly, my bad side is my best side! I've gotten the disease under control once again and have just begun a new round of VRT with a real live practitioner. The first thing I learned is that through daily work all these years, I've managed to maximize the small amount of residual balance function on my right side. Now, I'm learning to do the same on the left side.

I just checked VEDA's list of VRT people and see that Dr. Timothy Hain is still working in Chicago. He was one of the best and earliest docs to diagnose and treat people with vestibular (balance) disorders 40 years ago. FWIW, VEDA is the Vestibular Disorders Assn., has lots of info and references available at vestibular.org. With only the first two weeks' new effort behind me, I can already feel some improvement, and I'm confident that I'll be able to regain stability and balance...even though I'll be doing daily exercises for the rest of my life. I'm currently 78 and intend to continue to do volunteer instream work for our Fish & Game agency in a very difficult, wild little stream on Oregon's north coast...for years to come.

Thanks Joyces for the strong motivational aspect of your comments. I don't have MD but I sure have balance problems (from NF2 and probably just getting older). I use a cane when surfaces are not pretty smooth and at nighttime. I had balance PT first in 1996, when I had surgery for an acoustic neuroma (on the 8th nerve) which messed up some the 7th nerve = balance . The therapy helped some for a while but after a certain point it didn't seem to make a difference. Since that first time, I've had PT for balance, at least twice but have never felt since, that it accomplished anything for me. If I am doing PT, I like to see some results. I am wondering if I have to do the PT for a long time without seeing any results (or any results that seem significant) i.e. just be patient when it seems like nothing is happening?! I live in NYC with access to the best medical facilities so that is not part of the problem. I see that you refer to VRT - as opposed to just PT. I think the first experience was probably VRT. What years are you referring to when you say there were only a few VRTs?
P.S. I am trying to remember what the 3 contributors to balance are: vision, and you have named another - proprioception, and I've forgotten the 3rd!

Joyces, one further comment I wanted to make. I trust I may be one in a long line of people who have said something to the effect that you are to be very much commended for your diligence in dealing with the challenges thrown at you!

To BarbB: There's a big difference between a PT and VRT specialist. The PT person basically aims to get you moving without pain, while the VRT person is almost solely concerned with improving your balance. The first thing a good VRT does is assess how much balance function you have; then they design a series of exercises that utilizes that residual balance to give you far more stability. While you may use a cane, especially in low light situations, neither is good for your balance function: you rely on the cane instead of learning to "listen" to your feet. And, yes, I know that OLD people are always told to use a cane and provide night lights. Ideally, for your balance, you would walk in SAFE places in your house with all the lights out at night. (No throw rugs, kids' toys, etc. in your path. You should start in a hallway or a space with furniture on both sides for safety, or a helper to walk beside you. I live in the woods, far from streetlights or ambient light sources. My so-called lawn is an acre of elk hoof pits and pocket gopher hills; the driveway and road are potholed gravel. I never, ever take a light with me to walk at night, feeling my way along with my feet.

The three balance systems are:
1. Your incredible inner ear...assuming it hasn't been damaged by disease or age or disuse.
2. Vision, which is bad because every time you move your head or drive around a corner, you lose your focal point. Vision is, however, the system you automatically use if your primary inner ear gyroscope isn't working correctly. You need to work to learn to not rely on vision.
3. Proprioception, which is the feelings transmitted from you feet, ankles, knees, hips, etc.--your entire body. Simply put, if you're standing on a windy point, proprioception will automatically cause you to lean just enough to maintain stability.

If you're working with a good VRT specialist and you do the exercises every day, you should see results within a couple of weeks, really good results within a month. As we age, we lose some of the sensations in our feet and lower legs, so I'm currently learning to listen to my feet for a second time. I often walk on our gravel road, eyes closed, concentrating on how the surface of the gravel feels underfoot. I also have a DyneDisc that I put under my sock feet while I'm just sitting, moving my feet to feel the sensation of all the little points on the soft disc. I've been totally amazed at how many things I can do with my right side, which had been my bad side, as opposed to my newly-involved left side! Hardest exercise so far is stepping down and back up, one foot at a time for five reps, first with eyes closed and then with eyes open. Over the past two weeks I've become less likely to need to grab something beside me, which tells me that I'm getting better. I'm also not stumbling into end tables as often...they seem to be staying where they belong these days! <g> Goal is to be able to do that without wobbling or veering off course; I have a long ways to go! Ahead, I have standing on the disc, one art outstretched, and sitting on a yoga ball, alternating outstretched arms. I also do head/eye exercises every day, staring at a small "X" while rapidly moving my head from side to side.

Even though I've felt much more unbalanced than ever before, I did do a difficult instream survey just before I started VRT. Wading was difficult, and, with current pushing at me sideways, it was a real challenge. Walking along narrow ledges was flat scary. I trust that in 2-3 weeks, when I go back to check on the temperature monitors I placed that day, I'll find it quite a bit easier. I remember over 30 years ago being amazed at how many things there are to see when you're not spending all day staring at the ground! I learned to check the area ahead of me for obstacles and, if there are none, walk forward without looking down. What a revelation! At the time, my husband, grown kids and I played coed basketball once a week. After a month of working hard at rehab, one of the guys remarked that I suddenly needed to be guarded...before that, they simply had allowed me to stumble around the court, knowing I wasn't a challenge at all. The day that I stole the ball from one of my son's friends was very sweet...and he still talks about what a shock it was!

Are you pleased with the cochlear implants? I lost all hearing in my right ear recently. Oral steroids and ear injections were not successful, unfortunately. I don't think a hearing aid will be helpful. Thank you.

Hello Eileen123, I am very happy with my cochlear implant. I use a hearing aid in my left ear, and have the implant on my right. The two technologies work well together after the brain gets adjusted to hearing that way. I had my CI surgery done in 2005 and have never regretted it. Feel free to e-mail me personally if you have questions. Julie Olson

Welcome new members to the Hearing Loss group.

@deanodesigner and @djwenz, you may be interested in following the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/), in particular these discussions:
- Anyone else diagnosed with acoustic neuroma, a benign brain tumor? https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/
- SRS (Stereotactic Radiosurgery) for a benign schwannoma? https://connect.mayoclinic.org/discussion/srs-stereotactic-radiosurgery/
- Experience with acoustic neuroma? https://connect.mayoclinic.org/discussion/acoustic-neuroma-1/

@barbb and others, I think you and others would be interested in these informative discussions on balance, proprioception and the relationship to hearing loss.
- What exactly is proprioception? Anyone with experiences? https://connect.mayoclinic.org/discussion/propriociption/
- Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/

@eileen123, you may also be interested in these discussions about cochlear implants
- Cochlear Implants https://connect.mayoclinic.org/discussion/cochlear-implants-2e44a5/
- Cochlear implant for single sided deafness https://connect.mayoclinic.org/discussion/chochlear-implant-for-single-sided-deafness/
- My Cochlear Implant - a journal https://connect.mayoclinic.org/discussion/my-cochlear-implant-a-journal/
- Cochlear Implant expenses: How much does it cost? https://connect.mayoclinic.org/discussion/implant-expenses/

Hi everyone.. I’m new here. I’m a 45 year old with bilateral profound hearing loss with gradual onset over the past 30 years. My hearing loss is related to a genetic bone/connective tissue disorder called osteogenesis imperfecta. I currently use a bone anchored hearing aid (BAHA) on my right side. I no longer use a hearing aid on my left because the loss has progressed to the point that it no longer helps. I tried to learn ASL but it was challenging and I don’t know anyone who uses ASL anyway, so I gave up on that. I’m pretty isolated now because I can’t do any group social activities, even one-on-one conversations are becoming challenging. Fortunately I have an understanding partner who supports me and I’ve always been pretty introverted so I just spend a lot of time alone. I’m curious how others cope with the social isolation that comes with profound hearing loss..?

Welcome to the forum.

I started learning ASL also. I had 2 reasons. First to improve my ability to communicate and Second to exercise my aging brain. I think I was successful on both. It is frustrating that so many folks do not use or understand ASL. But in the process of learning ASL I met some deaf friends who taught many ways of dealing with the inability to hear/understand. Those communities of people are hard to find. Be patient and keep trying. I live in a pretty rural area so it was especially difficult for me. There are more opportunities in large cities.

COVID doesn't help either. There is always the internet but I have avoided social media because there are some risks associated with that. Besides, I don't believe anyone cares how many Cheerios I had for breakfast and other such trivia. My hobbies are individual sports and activities. All that adds up to the isolation you face. I know it would be good for me to play cards or golf with others, but that doesn't interest me much and hearing loss makes it worse.

Family are my main social connections. Since COVID my church family has become remote. I find that physical exercise and activities help my attitude too. The endorphins that are produced are known to help. Music helps well. I can listen to music with my custom moulded earphones. They exclude all outside noise and I just hear the music. Of course I don't hear ALL the music but I'm accustomed to that.

Hand in there and stay in touch.

Jim

Welcome to this group. My experience is similar to yours, with gradual sensorineural hearing loss that started when I was a young adult. Thankfully, I had acquired language; speaking, reading, writing skills, etc. by that time. Today I am clinically/medically deaf in both ears, but a cochlear implant has kept me in the hearing mainstream. Amazingly, the CI works very well with the hearing aid I still use in the other ear. The human brain has a way of adapting when it has a chance.

At one time I considered learning ASL, but soon realized that I would not have anyone to talk to, and that my friends, co-workers, and family members were not going to learn a new language to accommodate me. I discovered many wonderful technologies that went beyond my hearing aids, including hearing loops, FM systems, Infrared systems, and personal devices I can use when I'm in noisy social settings. I used those prior to getting the cochlear implant, and they worked quite well. However, I reached a point where I saw the cochlear implants had been improved a great deal, and decided it was time to go for it.

I still use such devices even with the cochlear implant when I find it difficult to hear. Yes, I struggle sometimes. My whole family was visiting last week, including 4 young adults between ages 19 and 22. Lots of energy and lots of talk. Did I miss some of it? I sure did, but I asked for repeats when it seemed logical. Lots of expended energy, but done while making great memories. It helps to understand that the stress created by working so hard to listen is exhausting. One has to know that taking a break is OK.

I encourage you to learn all you can about hearing assistive technology (HAT). It can make a world of difference for a person with hearing loss. ASL is beautiful, but it's only practical for those who are able to connect with other users.

Most of my hearing loss connections have come through involvement in The Hearing Loss Association of America (HLAA). I've met so many amazing people of all ages through this organization. It has taught me so much and given so many people hope for better technology as it develops. Check at http://www.hearingloss.org to see if there is a chapter near you. This organization turned my life around when I was slowly becoming a recluse due to hearing loss. Just learning you are not alone is a morale booster and motivator!