I got hearing aids and I am GLAD

[thornapple]

I had a really unsympathetic neurotologist who told me I have an AN in my cochlea, there is no hope for my ear, and to have another MRI in a year. He also told me, "You don't need hearing aids".  I also have a migraine variant which affects my hearing, and some hearing loss in both ears (I was told it was "mild").

After months of increasing problems and the AN ear getting worse, I decided to get hearing aids anyway. I could hear people talking, but I could not figure out what they were SAYING. I was feeling increasingly isolated.

WOW! They cranked up the volume in my AN ear and compensated for the areas I am losing in both ears,  and I am hearing things I never heard before! I am hearing harmonic lines I never knew were there in music I have been listening to for years! And I don't miss half the conversation any more. That is such a relief.

And these hearing aids are cute little things. Unless people are looking for them, they don't notice I have them on! And when they do, they say "wow, those are cute!"

Remind me to ignore doctors most of the time, will ya?

This might encourage those who have just been thinking about it.

 

[Battyp]

thornapple what type did you get?  I'm still trying to get some.  have any pics to share?

[thornapple]

I got these gizmos.

http://www.resoundpulse.com/frontpage/style/colours.htm

It takes some adjustment to get used to them, but it is amazing to me how well I could be "fixed". And they are hideously expensive, but they should last a few years. They hook them up to a computer, program in your audiogram, and compensate for the areas where you have hearing loss.

I got the fashion color on the upper right. They are bronze colored, match my hair, and are also iridescent green.

[Windsong]

hey that looks close to the design for the Oticon Delta i was looking at.....

hope i can get mine fast as i am fed up not hearing people....

I hope to put the thing in motion right after the weekend. I tried a hearing aid about 6 yrs ago before I knew about my An and they express rushed the order once i got the paperwork for it.... so maybe i'll be lucky this time too....

cheers....

W.
PS. can you tell us how much the resound one is please?

[Dealy]

Just got back from around trip of 100 miles to see local Audiologist about hearing aid. Was in KC back on April 6th and was fitted by Audiologist with a brand called Phonac with an FM Receiver if hearing goes worse. Audiologist wanted me to go local instead of having to drive to KC for Any adjustments. So we call our local Audiologist like I said and made that trip this morn. He carries the brand called Resound but said he has no idea how too program a FM Reciever should I need that. So he calls another Audioloist that he knew and he carries Phonac but I could not see him today because he is making a trip to Denver. What a disappoinment. Now I have to go back too another Audiologist again to get this brand called Phonac. I do not need the FM Receiver down the line but if I do-I need someone who knows how to program it. I guess this is what happens when you live out in the sticks as I do. Reside in Western Kansas. Heck we are so far behind in technology that Now I am surprized we even have telephones here. I even have too travel 100 miles to get MRI's because our local hospital cannot put MRI on individual discs. Talk about living in the past. Anyway-I guess I will have too deal with my non hearing issue for another couple of weeks. Reminder for those new reading this post- I am an NF2. Deaf in left ear-hearing aid does no good in this one. Good ear-if you can call it that now has 52% hearing left. This is why I made need an FM Reciever down the road. Isn"t life just a bowl of cheeries-not today it wasn't for me. Thanks-Ron

[Windsong]

HI Ron, am sorry you have to do this traipsing around for the hearing aid but it sounds like you are going to go with the phonac?
It's really strange facing/ perhaps having a second ear hearing loss. I feel for you. During these last few days it's been on my own mind and then i had to deal with not having a car while mine was in the garage and lo and behold not having wheels became my priority thought. Isn't life strange.  Now i have my wheels back today and thinking returns to my hearing, sigh. The good thing is no sign of  a second tumour (but hearing is dead in my An ear.) I have a hole in my An eardrum which no doubt plays a role in that loss too. Plus there is talk of a sympathetic hearing loss and cochelar hydrops. Nope not a bowl of cherries. Shall we make lemonade?

tc,
W.

[Dealy]

I actually kinda hijacked this thread from Thornapple. Sounds familiar though- I also hear what people say but cannot distinquish always what they are saying because I catch only certain vowels and words. Very isolating. I think also what is weighing on my mind-and it shouldn't is medical people keep on telling me how unique of a person I am. Example-when I got my radiation at JHH-we had too meet a doctor once a week to see how things were going and how radiation was being tolerated. Once in awhile I got this young Intern who told me that I had the rarest tumor known too mankind. I always wanted too say-"and your point is". Am I to feel good about this or something. This morn the Audiologist just said "Ron you are a unique case-then said something about my tumor growing". I am a kind person-so I do not always say what is on my mind. However-I felt like saying-Hey dummy-that's why I got radiation for-because iif it ends up growing-then out it comes and a hearing aid will be of no good anyway". I guess even professionals can be so callous in their remarks. You kinda of expect of people who have no knowlege of AN.s-but geesh. Just this past week a guy at work said' "Why don't you just have it dug out". Exact words. Oh My Lord-give me the patieance too endure . Well-that is all I have too rant and rave about for now. Thanks all-Ron P>S. Windsong-Check in too the FM Reciever-it may make a difference for you too.

[Windsong]

Thornapple, I forgot to ask about which hearing aid would be good for me yesterday but I can do that at the end of the week as I have another hearing test. What stupefies me tonight is that not only can i hear msyelf type on these keys right now but I actually have a tv on... .... the last month has been sooo bad trying to hear anyone unless they were smack in front of me that i am quite surprised tonight. (well i spoke too soon... had to crank up the vol 20 min later ouch!) loud but still muffled...

The tv is on because a sibling called to say there was this thing about "cutting edge brain surgery" on CTV tonight at 11 pm. I'm guessing but i am thinking it might be about stereotactic surgery?  (nope it wasn't.. came back and corrected that.. it was about a robotic arm and brain surgery  lol wow!)

Yes, Ron, unique is a word we hear hmmmm... the other one is "rare"....

on the plus side i get to tell any new docs, when i see one about any other thing wrong with me, all about Ans and radiosurgery.... .. a lot  have never met anyone with one. Maybe i should make this laminate card of mine and carry it in my wallet to show around lol....am wondering if others also get asked about one's symptoms which led to the An being found.....hearing loss often being one of them....

take care all,
W.

[thornapple]

The little buggers cost $2,000 apiece.

Sorry I have been AWOL>>>for various reasons.

I get that "you are so unique" stuff, too..then there is the rank ignorance. I go to a neurologist for migraine, and he told me acoustic neuromas are common! On your planet, wherever that is, I responded.

Neuromas in the cochlea are even more rare. I have been told by several doctors that there is absolutely nothing that can be done about it. If they surgically remove it, they will destroy the cochlear nerve and probably destroy the cochlea and labyrinth with it because of the location. If they do radiation, it will kill the nerve it is wrapped around. If they leave it alone, and it grows, it will be contained within that area of my skiull and stop growing---in other words, not grow down that nerve channel into the brain.

So in some ways, I know I am fortunate, although unfortunate. I will probably gradually lose the ear, my balance, not need surgery, and my facial nerve will likely never be affected. I have two friends with ANs so I know what the outcome can be. One is only deaf and is otherwise fine, and one has numerous problems in addition to being deaf. I will probably be just fine, if I can adjust to the situation. and I will....eventually. right now I am in mourning and very depressed.

Hearing aids require some adjustment. They make my ears ache, not used to having things hanging on them or poking into them. Sometimes, the noise is not comfortable and I have to remove myself from a loud situation, or take the tubes out. My tumor ear is very sensitive to loud noises. And since I am hearing things I have not been hearing, THAT actually makes me tired.

I think anything physical/soundwise/balancewise your brain has to do that is not normal makes one very tired. So, this is very new, and I run out of steam quickly after hearing in a different way all day. I can tolerate my contact lenses better than the hearing aids.

the music CDs I listen to almost daily have harmonic tracks I never heard before==guess I said that already, but it is like new versions of old favorites! very weird. I learned that the area of the cochlea that hears my male cat's purr is just gone on the right side. I'll have to settle for feeling him purr---my husband can hear him from across the room.

I can hear directions sounds come from again.

Don't know how long my hearing on the right will last, but I intend to enjoy as much of it as I can for as long as I can.

[Windsong]

Thornapple, I  can't begin to tell you how much "solace" i got from your post, even as i sympathized with your situation. I went back and read your posts now too and I admired the wry humour you put in here and there. Even as i smile i recognize the kernels of acute observation of the med world you have encountered and appreciate the little phrases you stick in here and there describing your own feelings and thoughts on the way this little "grain of rice" in an area the "size of a pea" affects your life.

I've been overwhelmed with recent doc appts and dealing with what is going on in my "good" ear never mind the An side or the "disappearing ear drum" there (looks like a mouse gnawed hald of it away when viewed on a nice tv screen).

My neuro otologist says the resound is a good hearing aid. So i was very interested in what you said about that.

I have a hearing assessment in a few weeks for that. I could have had one at the beginning of May but it would have been at 9 am and I (i) can't imagine fighting traffic into the city during morning rush hour and (2) don't dare make an early appt as I tend to not hear my radio alarm and miss those.... and no, I do not want to buy a vibrating alarm for waking up for med appts lol...(in case anyone suugests that lol)... that seems an awfully rude way to wake up (and vibrations set off this other crappy weird neurological thing I've had for some years)...

Thanks for sharing your post here thornapple. I share the losses in life in you mentioned...

W.

[thornapple]

 

windsong, you need a cat like mine if you sleep through your alarm! I do, often....but not for long, because the new, patented GE ALARM CAT comes to meow in my face and pat my cheeks with his paws!

You can convert any existing cat into an alarm cat if it iis addicted to treats. Just start calling kitty into the bathroom in the morning after the alarm goes off, and feed him treats you keep in the medicine cabinet. I guarantee that cat will be eager for you to leap out of bed when the alarm clock goes off, whether you hear it or not!

Cat licks are optional. He starts pulling my hair if I don't get up at the first yowl and pat.....

[Dealy]

Round 3- We kinda gave up on the Audiiologist referral from ENT- so my wife contacted a local hearing aid professional in our town. My wife spoke to her this morn. She called Audiologist in KC and come to find out-he never used a Phonac brand on me when I was in KC-See thread up above.He just wanted to see if a digital worked-does not matter the brand. Anyway now we have appoinment with her on Saturday of this week. I cannot believe it has taken almost a month. One just has too endure the medical field sometimes and communication is not very good between them. Thisl lady asked my wife how come I did not get Hearing Aids along time ago. My same question. Now I know i  have  lost faith in my ENT's Audiologist. I guess he just lost a sale. Anyway-I thought I would update those who may be interested to know my status. Thanks-Ron.

[Boppie]

Dealy, My local hearing aid specialist wasn't a licensed audiologist and could not sell me a hearing aid for SSD.  I was surprised by this.  Apparently the ENT or doctor who treated me for the hearing loss had to certify my need for the hearing aid for SSD.  This important fact came into play with the insurance company too.

[Windsong]

...that is so clever Thornapple, a cat alarm!

I'd probably get a cat too except my son is big time allergic to cats sigh....

now i have this great vision of a cat patting me awake, however, and it's kinda cute sigh.....

tc,
W.

[Dealy]

Monday of this week got fitted with permanent ear mold for hearing aid. What a difference. Actually heard birds chirp. Today is 10 months since initial FSR radiation. With hearing aid cannot tell if I am losing more hearing (natural) or what. Cannot hear almost nothing w/o hearing aid. Next MRI is last of June-1 year. Hope hearing does not crash more. The hearing aid I have now is only a Temp. Waiting for a $3000 dollar Phonac (ouch) with FM capabilty. Not obligated-but most likely will go with this since my hearing is getter worse-not better. Phonac is adapted to FM Receiver if more heraing loss happens Gets worse. Yesterday Docs at JHH extended 30 days of Celebrex due to inflammation. Well that is all- At least I can hear again-just will never be like natural hearing again. Thanks Ron. Reminder-I am an NF2 with only one hearing ear left-2.4CM tumor  that was radiated last summer with FSR.