Preparing for the Future

@ellene, Hi there Ellene. (Is that your name?) I haven't been aware of any others with NF2 on this list but I too, have NF2. One of the first questions that come to mind, is what was your age when you were diagnosed and what is it now (if you don't mind saying). I had no symptoms until I was 57 when I experienced hearing loss and I just turned 82. I am about 100% deaf in the ear where a 3 mm acoustic tumor was removed (at age 57) and now have a C.I. in my other ear and do quite well with that. Do you have other symptoms besides hearing loss? (I have not, except for the fact that only recently my balance has become an issue.) I ask these questions because your answers would supply clues as to what to focus on in preparing for NF2. All best to you!

My name is Ellen the e at the end is the first letter of my last name. I was diagnosed with the bilateral shwannomas (acoustic neuromas) at age 55. They were in the 6 to 7 mm range, if I remember correctly.I received the NF2 diagnosis at Mayo where I am being seen for the shwannomas at the same time. I am 57 now. I had full spine MRI and have no other tumors at this time. I have balance and disequilibrium issues. I also have oscillopsia, which drives me crazy. I had vestibular therapy for three months and did the exercises faithfully with not even the slightest improvement in balance, disequilibrium or the oscillopsia. I had Gamma Knife Radio surgery last April. There hasn't been any growth since then. The other symptoms have not gotten worse, with the exception of the hearing. My next MRI is in a year.

Your medical doctor has told you to prepare for the future, but hasn't given you any advice on how to do that. I was there once myself, but it was years ago when I was in my early 20s. I am very thankful that I discovered the organization that is now known as The Hearing Loss Assn. of America, Inc. (HLAA) when I was in my 40s. By then I was desperate for support. My real learning and coping begin at that point when I learned I was not alone, and that other people like me had ways of coping that I had never been told about by doctors or audiologists. The first 'miracle' was learning about assistive technology that went beyond the bicross hearing aid I was using. I found out that a tiny component called a telecoil, in some hearing aids could connect me to sound systems. All of a sudden I could enjoy presentations because of that telecoil and an installed piece of assistive technology called a hearing loop.

Further, I learned that same technology could be applied in personal settings by using an FM system with a small hand held microphone. Back then, that required plugging a wire with a 'mike' into my hearing aid. Today, that kind of technology is wireless. It works the same way, but is less cumbersome.

A few decades later, after watching HLAA friends go through the cochlear implant process, I realized how well they were doing and decided it was time for me to consider that option. I was implanted with one CI in 2005. It was another 'miracle'. It was done in the ear that had been unaided, so the poorer ear. Today I remain bimodal, meaning that I use both a CI and a hearing aid. My brain has rewired itself to depend on both of them to hear. My only regret about getting the CI is that I didn't do it earlier!

I encourage you to seek out and meet other people through HLAA. There is a great deal of information at their website; http://www.hearingloss.org If there is a chapter near you, meeting people in person (when that is possible again), is a huge help. Chapters all over the country are meeting via Zoom right now, so there are opportunities that were not available before. All of the Zoom meetings are captioned.

Most important, know there is HOPE for your situation. If your ENT has mentioned cochlear implants, it likely means that you are, or will be, a logical candidate.

Meanwhile, try some of the assistive devices that are available. See if your hearing aid has a telecoil and find ways to use it. And keep connecting with other hard of hearing people. It helps.

A few other thoughts. Lipreading is important, and difficult in our current masked society. Facial expressions tell a lot. Good to practice and be aware of this when you can be. Some may tell you to learn sign language. Most of us find that not to be a solution, unless everyone around us also learns it which generally doesn't happen. Technology is the answer for most of us. Learn all you can and let us know how it's working for you. You are not alone!

@julieo4 @tonyinmi I received my first newsletter from HLLA this morning. It's full of valuable pertinent information! Thanks for letting me/us know about it and for the countless hours you spend/have spent making it such a valuable resource. Nancy

My hearing loss took place over 4 years. I guess I had hope that each time there was another change that would be the last one. Up until three months ago I was still able to have one-on-one face to face conversations with people and talk on the phone. Now hearing is completely gone and I WAS NOT prepared for this. I really miss hearing the voices of the people I love.
Looking back, I would have taken a sign language class as you are doing. I would have learned everything I could about the technology while I could go into a tech store, ask questions and hear the answers. I would have researched cochlear implants thoroughly, maybe even started the evaluation for one as it is a long process. I would have gotten all my affairs in order as they say; because now it is so difficult to speak with a financial advisor, banker, or estate attorney. My daughters have been great help. One schedules all my doctor appointments and goes with me to take notes. She is also learning sign language. The other daughter comes over and writes down my phone messages and helps me with the computer. So if you have people who can help don't be afraid to tell them what is going on and ask for help.
I am also trying to find some device that will signal me when the phone or doorbell rings. Also looking into getting a companion dog as another source of support. But my understanding is that getting a companion dog is another long process so I wish I had done that in preparation also. I hope some of this is helpful to you. Judy

You may want to sign up for the Lip Reading Orientation presentation by the Treasure Coast Chapter, Hearing Loss Association of America, on Saturday, March 6 at 10:30am. You can email request for login link to: treasurehearing@gmail.com.

I would suggest looking at ClearSounds Communications, ADCO Hearing Products or Diglo, which used to be Harris Communications. They have these things and many more - you can see their products online. Harris (now Diglo) and ClearSounds offer 20%off to HLAA members. (www.hearingloss.org)

There are some wonderful captioned telephone providers. Try CaptionCall.com or CapTel.com These phones are free to people with diagnosed hearing loss. Information will be on their websites. Just received a new catalog from Harris Communications, which just changed their name to Diglo. Motto "Live better, no matter how you hear." Request a catalog at diglo.com They have just about everything available listed there. You might also inquire to see if your state office for deaf and hard of hearing has, or is aware of an assistive device center in your state. I don't know what state you are from. Everything has a learning curve, but it's not that hard to use these different technologies. You just don't want to purchase them without trying them, unless they are returnable. Some obviously work better than others. Many of us have hearing loss in excess of 120 decibels. With technology, we can remain in the hearing world where most of us wish to be. Good luck to you. Keep asking questions. 🙂

@julieo4 Thank you for your reply. I am not really very upset about the probable loss. It is what it is. I have been under the assumption that there will be a lot of technology available as I lose my hearing. Many hearing folks have said I should learn sign language. I tell them that unless they learn sign language, what good will it do. Other than my sisters, no one has said, "I will learn it with you." So I haven't looked at sign language as being an option that will be helpful. I'm glad you reinforced that. I am already hooked into HLAA. I should probably attend meetings and be more diligent about reading their emails. Thanks again,

@th1 Thanks for the suggestion. I had already done that.