Author Topic: Hearing aid options  (Read 1794 times)

prancingpaws

  • Newbie
  • *
  • Posts: 2
Hearing aid options
« on: March 15, 2022, 03:52:30 pm »
Hello, I'm new to the group. I had an acoustic neuroma removed 53 years ago. With some reading and YouTube, I've learned that the surgery was quite different way back then.
I have dealt with tinnitus and moderate facial paralysis since the surgery.
I am curious to know if there are any advances in bilateral cross hearing aides.
I have 2, one wired and one not, from when I was a teenager. The aide that sits in the "good" ear is like having a big wad of gum stuck in the ear and reduces the natural hearing in that ear.  Although it was good to suddenly have some sort of hearing from the surgery side, I could never get used to the reduced natural hearing in my good ear.
Does anyone know of any sources for such information?
Sincere thanks

donjehle

  • Sr. Member
  • ****
  • Posts: 274
Re: Hearing aid options
« Reply #1 on: March 16, 2022, 06:03:45 pm »
Welcome, prancingpaws, to the ANA Discussion Forum!  We're glad you are here and have started posting!

Wow!  You had your AN removed 53 years ago!  I didn't even know they were doing such a thing so long ago.  You must have a lot to share about your experience of dealing with tinnitus and your facial paralysis and everything you went through.  I would love to hear about your journey!

As far as the bilateral CROS systems go . . . my understanding is that there have been major advances in the last few years.  I have only started mine this month so I can't really compare it to the previous systems, but my audiologist has claimed that there are huge improvements over the past several years.  For example, the sound in your systems are probably analog; the newer ones are digital with much better sound and much better control over what you can hear and what you do not.

I had been told by hearing aid wearers over the years how they had problems hearing in restaurants, but the newer BICROS systems have directional microphones and the ability to block unwanted noise.  I work in a hospital, and everyone is required to wear masks.  My system has an option to improve understanding for people wearing masks.  I couldn't believe it!  But it works!  Older BICROS systems may have amplified all noise, but the newer ones are very selective in the frequencies it amplifies and which sounds are lessened.

The 'dome' which is placed in my good ear does a great job of letting natural hearing in.  I have only been using my system for a couple of weeks, but I am very happy with it.  You asked about sources for information about the BICROS systems, and you can search for information on the internet.  And I read what I could about them and watched a number of YouTube videos.  However, the greatest help I received was from my audiologist.  After researching online, I thought I knew which system I wanted (and there are several good ones out there), but after meeting with my audiologist, she recommended a brand that I was not planning on purchasing.  But after she explained why it was a better fit for my needs, I agreed with her and purchased the one she recommended.  I asked her if she recommended the brand I bought for all of her patients, and she told me, "no."  She says she tries to match the BICROS system to the specific needs of her patients, and the brand I purchased is not the one she most recommends.  So, that is why I say your best resource is your audiologist.  I am sure he/she can recommend a BICROS system which will runs circles around your old systems.

Best wishes with it and your continued journey!  Please keep posting!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

prancingpaws

  • Newbie
  • *
  • Posts: 2
Re: Hearing aid options
« Reply #2 on: March 17, 2022, 03:02:21 pm »
Thank you Don for your kind reply.

Lol, yes, fortunately for me, AN surgery was done back in the day! 
Realizing a slow hearing loss in one ear, my family ENT directed my mother and I to the Audiology Group in Los Angeles, CA.
This was a small office that many years later became the House Institute.
Back then they did not diagnosis with an MRI.  They injected a dye into my spinal column, strapped me to a table and tilted me downwards.  The dye traveled through my spinal fluid, into my ear canal and where it stopped, told the doctors where the AN was.
I was very fortunate though as I believe Dr. House consulted on my case.  Surgery was done by Drs. B.H. Britton and Hitzelberger. 
Back then nothing was done to improve any damage or compromise to the facial nerve.
Over the following few years the facial muscles improved slightly, but never back to 'normal'.
I used to say, I'll look 70 on one side and 40 on the other.  lol
Probably the most difficult to deal with is the tinnitus.  Sometimes it can be deafening.
I listen to talk radio at night so I don't focus on the tinnitus.

Thank you again for the hearing aid information.
Will have to look for a good audiologist!
Carole


donjehle

  • Sr. Member
  • ****
  • Posts: 274
Re: Hearing aid options
« Reply #3 on: March 17, 2022, 06:08:47 pm »
Thank you, Carole, for posting again.  You really pioneered the way for the rest of us!  I really appreciate how you led the way and how you have maintained a sense of humor through it all.

I know that a good number of ANA members have their surgeries done at House.  I hear a lot of good reports from there even today even though the neurosurgeons may have changed over the years.

Some people struggle with having an MRI today, but I cannot even imagine being on a tilt table and having dye injected into your spinal column.  I am so glad they don't do that anymore!

Your good spirit must have done you well dealing with your facial nerve damage.  If only we could put your secret to coping in a bottle and market it to all the others who are struggling emotionally and mentally with their loss of facial movement!  It is so helpful how you post positively about a very terrible situation you experienced.

I also have tinnitus, but it does not seem to be as bad as yours.  Most of the time I can ignore it.  But every once in a while, I will think, "Why does my CROS hearing system have so much static?"  And then I remember that it's not the hearing aids; it's my tinnitus making the static sounds.  It is always there, but usually I am able to ignore it.  It sounds like yours is too loud to do that.

You might check with your audiologist about the tinnitus.  Some of the new BICROS systems have a tinnitus control feature.  It does not eliminate the tinnitus, but it plays some tunes which some people find helpful in reducing the impact of the tinnitus.  It is somewhat like what you do in playing the radio at night so you don't focus on the tinnitus.  So, you could explore that option with your audiologist.  I don't know if that was a feature available on your older hearing aids.

Thanks again for sharing!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DZ

  • New Member
  • *
  • Posts: 16
Re: Hearing aid options
« Reply #4 on: September 12, 2022, 06:30:05 pm »
Dear Don & Carole - Thanks for sharing your personal information.  I am just starting my research on my left hearing rehab as I now have no hearing since my translab surgery.  So how do you find a great audiologist?  Are there any specific qualifications or experience I should look for? Are they the same folks who did my hearing tests? And since there are so many companies and options (I am looking for a non-surgical option), how do I know they are not pushing brands/companies that they may get compensated for? Any suggestions?  Thanks!!
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

donjehle

  • Sr. Member
  • ****
  • Posts: 274
Re: Hearing aid options
« Reply #5 on: September 12, 2022, 07:36:50 pm »
That's a great question, donnazubek!  And I'm not sure I have an answer for you.  Hopefully someone else can tell both of us the answers to your questions.  I just know that I have experienced a few different audiologists, some seemed good, and some not so good.  When I wasn't happy with one audiology group, I switched to a different one.  And now that I have moved to a new location, I will probably go to a new audiologist.  And I really don't know what I should be looking for.

My last audiologist was deaf in one ear since childhood.  She didn't have an acoustic neuroma, but she had single-sided deafness, so it seemed like she understood my situation, and that gave me some comfort.  But I'm sure there are many audiologists who are not deaf and yet are very good at what they do.  I just don't know how to find them.

Best wishes on finding a good one!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DZ

  • New Member
  • *
  • Posts: 16
Re: Hearing aid options
« Reply #6 on: September 15, 2022, 03:27:18 pm »
Dear Don -
Thanks for your thoughts on the matter. It was easier to find a specialist physical therapist that focuses on vestibular issues because of the VEDA website and the booklet from this organization but I am not very good with a random selection for an audiologist. I think I am looking for the same type you have - the CROS.  How do you find this device for your needs?  Can you identify the direction of sounds?   

I will do some more research on this website and others and get back to the group.  Thanks again for sharing! (And I completed my signature description- thanks to you and your instructions!!!)  Donna
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

donjehle

  • Sr. Member
  • ****
  • Posts: 274
Re: Hearing aid options
« Reply #7 on: September 20, 2022, 07:49:15 pm »
Nice signature, Donna!  Congrats!

I agree with you -- it was easier finding a great vestibular therapist than it was a good audiologist.  I still haven't found one in North Georgia where I now live.

But to answer your questions:  Because the CROS system sends everything to my non-AN ear, it was difficult at first identifying the direction of sounds.  I would always turn in the direction of my good ear.  However, with time, I seem to be doing better with that.  I actually don't know why, but it's not the struggle I had at first.

Let me tell you the story about finding the device for my needs:  Because of having the brain tumor, I really did not want to having hearing aids which generated electromagnetic frequencies.  When I mentioned this to my first audiologist, he said I was crazy, and that there was nothing to support EMFs contributing to brain tumors.  And he went on to tell how wonderful having the bluetooth capabilities in the hearing aids (you can connect them with your cell phone and have the sound right in your hearing aids; you can connect your television to your hearing aids; your stereo, etc.).  He did not listen to my concerns and wrote them off.  So, I switched to a different audiologist.

I think she thought I was crazy, too, (and maybe I am!), but at least she listened to me.  She recommended the Oticon CROS system since it was less invasive to the brain because it used another way to transfer the sound from the one ear to the other going around the brain and not through it (I'm trying to keep it simple here and not use the scientific terms).  When I found out I could also turn the Bluetooth off manually, that's when I decided it was the system I wanted.  Some of the CROS systems do not give you the option to turn off the Bluetooth.  So, even though my second audiologist thought I was concerned about something that she didn't see as a problem, she still gave me her recommendation on what she thought would best serve my needs.  She, herself, did not wear an Oticon, and the brands on her desk were from other companies, so I didn't feel like she was trying to push me toward the brand she advertised or used herself.

Would I recommend the Oticon CROS system to you, Donna?  Not necessarily.  It all depends upon what your particular needs and desires are.  You might really enjoy the benefits that some of the other CROS systems offer.  The most important factor is finding an audiologist who will listen to you and then try to meet your specific needs.

Let me know how it goes!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DZ

  • New Member
  • *
  • Posts: 16
Re: Hearing aid options
« Reply #8 on: September 23, 2022, 06:33:22 pm »
Dear Don -
Thanks so much for sharing your experience and opinions on the CROS hearing system. Your detailed information to me and others have been so helpful for me - just wanted to let you know.  I took notes so I will be prepared to discuss with the audiologist (when I locate!). Donna
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

donjehle

  • Sr. Member
  • ****
  • Posts: 274
Re: Hearing aid options
« Reply #9 on: September 24, 2022, 06:10:02 pm »
What's interesting about these forums is that we all are going through the same journey, and yet, we all have different experiences.  What works for one person does not work for someone else.  And I'm okay with that.  But I still gain encouragement and inspiration from those who post here, including you, Donna!  Thank you for sharing your experience with us!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


anything
anything