I visited my third hearing specialist this morning, and I wish I could say I walked out of there with a renewed hope for some restored hearing.
My journey began in my late twenties, when a ringing in my ears had arrived and never left. After MRI and CT scan and various other tests, it was established that I was losing my hearing but nothing more significant was occurring, so that part was a relief. About 15 years ago I met with a world renown hearing specialist who sold me a $6,000. pair of inner ear hearing aids, state of the art, that he was sure would give me much relief in the world, and I believed him. When I put then in my ears and he began writing on a piece of paper I instantly began to cry, because I could hear the scratch of the pen on paper. My husband teared up a little too.. and we walked out of his clinic thinking we had solved my hearing loss issues. Shortly after, I discovered not only was the inner ear aid extremely annoying and alittle painful, it was not giving me any clarity in speech, just a whole lot of LOUDNESS, which I didn't need. After a month or two of trying to make it work... and this is what that specialist told me to do.... give it time... I realized it really wasn't doing a damned thing. So I tossed them aside and moved on.
The next specialist experience was about eight years ago. He could DEFINITELY help me, hearing aids had advanced. I wanted to believe him too... so I went through the testing again and bought the newest and best digital hearing aid available.. just one this time because I was now deaf in the left ear, no need for an aid. I explained that I needed clarity, not volume, and he said the new aids gave much better clarity. $3,000. later, I walked out the door with a whole lot of loud noise..... but no clarity. After a few aggravating weeks I went back. They said I needed to give it more time. I did. All it gave me were headaches. Put back in the box after three or so months, I gave up once again.
Years passed, and my husband has an ear/nose/throat doctor for his ear wax issues. He has talked to him regarding our frustration with my hearing loss and once again ... "How does she manage without hearing aids, send her in, we can definitely help her." Skeptical, I was, of course. But I made the appointment.
That was this morning. I sit down with him and he looks in my ears and down my throat and up my nose and takes my medical history. He asks all the questions I've answered before and then he sends me to the booth for my third or fourth hearing test. The woman giving the hearing test says... now, repeat the word to me when I say it to you. I tell her I will not hear the word she is going to say, what would she like me to do when I don't know what it is? She says "Why are you taking a hearing test if you can't hear?"... I say.. I'm here because I am significantly hearing impaired and YOU people are supposed to know why I'm here. I did not put myself in this booth. She laughs and says.. OK lets try it.
Of course, I fail magnificently. New Specialist comes back into exam room afterwards with results and says... "WOW, you are significantly hearing impaired, how do you manage? Jeez, do you read lips? "
um, yes. I told them this when I walked into their office, as I do everywhere I go, so that they will look at me directly when they are talking to me.
Is it me, or is this whole thing just a little... unprofessional... or something. I mean, this is what they do for a living... deal with people who have hearing loss, right? Their reactions, although they were friendly, were a little.. odd? Juvenile? Maybe I'm being too sensitive.
Anyway.. the verdict. " I have nothing that will help you. Hearing aids should not have been sold to you before, because they will not help the type of hearing loss you have.. you have total speech recognition loss and also volume loss." So basically I blew $10,000 on hearing aids that were never going to help me decipher conversation in the first place. Insurance doesn't cover hearing aids, in case you didn't know. Yeah.. because it's not deemed a life threatening situation, it's not covered. It IS life altering, I'll tell you that.
I ask Specialist No. 3 if there is anything on the horizon I might look forward to someday, and he says point blank ... "No". Just that. Awesome.
The one suggestion he has is to have a consult with a cochlear implant specialist. Now, I've heard of them and I've seen them, it ain't pretty, but if it would restore my hearing I might consider it someday. I found out the chances are 50/50, and the noise you do eventually hear is not natural noise. You have to retrain your brain to decipher the NEW noises you would hear, if it actually works. I don't think I'm up for it. I told Dr. No. 3 I didn't think I could tolerate the hardware on my skull and in my ear, and he said... "well then I guess you're not desperate enough...yet".
More awesomeness.
*sigh* I drove home today with mixed feelings. I already knew most of what he told me, because for years I've been telling audiologists that their aids were not giving me any improvement and they were just poo-pooing my rejection of their products. Turns out I was validated, I was right. The attitude of Dr. No. 3 was a bit off putting, for lack of a better way to describe it... but maybe I just didn't like the news he was delivering. I do think he was being completely honest, if nothing more helpful.
So that leaves me with the same hearing loss frustrations I have known for a while, no definite answers and only one new direction I can take that is pretty drastic with no guarantee. I'm writing about this today not for your pity, because there are so many worse things that can happen to a person and so many people who suffer from this and much more difficult ailments. My purpose for putting this out there is to ask any of you if you have experience, if a relative has experience with this surgical procedure, and what their success rate and comfort level has been.
I'd show you pics of the actual surgery, but it's gross. TMI for now.
It is what it is.
I have nothing of value for you except sympathy for dealing with those who are not offering you the professional service that should be expected of them. Very frustrating that is. If you felt you needed more help with life needs maybe an occupational therapist would help. I had hearing impaired patients when I used to work as a physical therapist and they had things like light activated phone ringers and such. You are probably well aware of what is available. Nothing that changes your hearing loss sadly.
ReplyDeleteHi Karen it is horrible to hear what problems you are going through I cant say hang in there because you have but I will tell you about this .25 years ago or around that a lady at my daughters school had a little baby boy when he was about 2 years old it was discovered he was deaf.I cant remember whether he was fully death or to what extent his extent was his hearing loss all I do remember was he was the youngest ever Cochlia implant patient in Australia at the time.He grew into a wonderful young man but I do remember his parents face when the operation was over and this cute little boy was with them and could explain things and talk with others.Priceless.-love dee x
ReplyDeleteKaren, you should contact Terry Golson at the HenCam blog. She had the surgery and could give you her experience. She blogged about it maybe a year or two ago? Seriously, reach out to her. xo
ReplyDeleteI know nothing of implants but am very familiar with hearing loss as my Dad was severely hard of hearing..none in one ear and only about 10% in the other. He suffered from Minears when he was younger. Many many years of bad hearing aids and discomfort and loud noise. He also learned to lip read but refused to learn to sign and was forced into early retirement as he could no longer fly for work. He managed but it was tough. Going blind in one eye the same side as his deaf ear was a nightmare for him...
ReplyDeleteI feel your frustration and your distrust of the system... I do believe there is someone who could help you- the trick is to find them..
Perhaps you should write to a medical show like Dr OZ- they love a challenge and who knows where it might lead? At the very least maybe some recommendations? Keep searching, you must be your own advocate- the system sucks but there are good people out there somewhere
I'll send good thoughts out into the universe. <3
As I read this, I find myself being thankful that my own hearing loss is manageable, and that the ringing in my ears is only at a deafening volume part of the time.
ReplyDeleteKaren...of course I understand every bit of what you are saying as we've traveled the same road. I do wear my aids even though it simply amplifies everything around me, without them it is total silence. A year ago I had updated testing and we then proceeded to negotiate a price on the new hearing aids, like a used car.
ReplyDeleteI always think, if they can put a man on the moon...
Sending a big hug.
XO,
Jane
I am so sorry you are going through this. Did you have a head injury or anything prior to the hearing loss? As I was reading this I was wondering if you'd considered cochlear implants. I do not know anyone personally who has had one, although I've watched a few documentaries and studied how the process works a bit when I was doing the neuropsychology classes for my masters. Yes, I like watching the surgery stuff (blush).
ReplyDeleteI was thinking of you when I went to vote this morning. Mostly just hoping there was no heat in your house between you and the hubby on election day ;-)
That does suck, and I'm sorry you have to go through this.
ReplyDeleteMy only observation is that with both of my parents, their hearing issues eventually isolated them, and changed their personalities, along with age of course.
So if you are going to be deaf, you will have to work hard to not isolate yourself.
Hey it can't be any worse than brain surgery, can it?
And I'm sure it won't take them 3 times, just sayin.
yes, he sounded abrupt, but at least he put it point blank - and after two other wasted efforts (and $), maybe that's better than 'sure, this will help!' i am sorry as this was certainly not the news you were hoping for.
ReplyDeleteIt's definitely not an ENT you should be seeing. Maybe a doctor in Otolaryngology. I am so sorry you are going through this issue. It was something I never knew about you. xoxo
ReplyDeletei never knew this about you and i pray that whatever route you go, your hearing is restored. i hope you keep us posted on your journey.....xo
ReplyDeleteThose are old photos. The devices are much smaller now. Tomorrow's post on my blog will have photos of me and you'll be able to see my CIs.
ReplyDeleteTerry at HenCam.com
My granddaughter was born deaf, and has a cochlear implant on her right side. The left infected twice, but a month ago they tried to implant the left side, and so far so good. Please read my blog about her graduation from Northern Voices. http://muffysmark.blogspot.com/2013/06/graduation.html
ReplyDeleteThe surgery looks gross, but what surgery doesn't. I have a friend who was adult onset deafness and opted for an implant about 5-6 years ago. In fact she was the key instrumental person for my granddaughter getting the implants. SHe held our hands through it all. She is very involved in hearing loss, and goes to state meetings, writes the newsletter for the local chapter and I know she would help you make an informed decision. If you respond to this comment, it will come to me in my e-mail. From there I will connect you with her!! I know she would love to explain the pros and cons, and how isolated she felt before she regained her hearing. Good luck making your decision. (((hugs0
Karen, I can't speak to the hearing loss, but I can speak to the treatment of doctors. I went from doctor to doctor for years, even the head of endo at Hopkins, and none of them diagnosed me or knew how to treat me until I finally found someone by chance and with a lot of effort and education on my part and my husband's part. Don't give up, seek out whatever treatment you can but from sources who will work with you and support you instead of making you fit into a box they already know something about. I wish you the best as I know from my mother in law's experience, hearing loss is very difficult to live with.
ReplyDeletexo Kat
Karen, a co-worker's new baby was born with profound hearing loss and they are in the process of having him fitted with the implants. Let me know if you'd like to be in touch.
ReplyDeleteWow Karen, I wish I knew anything but I don't. My father is pretty deaf, but hearing aids help him, although I know the noise gets to him too. What you are talking about I've never heard of. It would be a difficult decision to make. I'm not sure I would want to do it. But, I'm not in that position, YET. :)) I'm rambling,I'm sorry. Wish I had good news for you!
ReplyDeleteYou are so right --that does suck! Don't know anyone who has had the implants-in fact those photos are the first I've ever seen- I didn't know they were external! Surely improvements will be made in them. I have some hearing loss from repeated ear infections and perforated ear drums when I was 19years old and had the ringing for months, but thankfully it finally went away. Do you still have the ringing?
ReplyDeleteThis is my nephew Austin Chapman. He is a film maker and producer in the making. Here is his info and there's a lot more explaining his story I will send later He heard music for the first time last year, and has documented it all.
ReplyDeleteAustin Chapman
Hey Lori,
Always nice to hear from you... I've pasted my audiologist info below.
It's important to try more than one brand but also very critical to understand how the brain works in this development.... When I first started hearing this good last year I could hear every word being spoken but could understand none of it.
It was like hearing a foreign language because I heard it all but with no understanding. One year later I've made progress but it's still a slow process learning every single word's pronunciation. Throw in different voices and accents into that mix, making the hard even more difficult.
Doug Richards, Au.D., FAAA., CCC/A
Director of Clinical Services
Board Certification in Audiology
douglas.richards@connecthearing.com
Best of luck!
A
i hope this helps and like I said when i future out how to get all his stories for you I will.
Hi, I linked to your blog via Terry Golson's blog, Hen Cam. My older sister got two CIs about five years ago, when she was in her early 60s, after a life of hearing aids that 'sort of' helped. (She was actually an RN for a number of years, but needed a lot of accommodations.) It was painfully frustrating for her family and friends, so I know it was devastating for her, although she is an incredibly strong person and has had an interesting and fulfilling life. Anyway, the CIs, while not the perfect solution to her profound hearing loss, have changed her life. She can have conversations in a group, listen to music, and enjoy movies. The first time in our lives that we had a "normal" telephone conversation (ie, we could both hear each other without screaming or going through a TYI operator) reduced me to tears of happiness. Her external thingies are nowhere near as large as the ones in your photos and are almost completely hidden under her short hair do. My advice would be to consult a couple of good CI specialists and get well-informed about the procedure and whether it would be beneficial to you. So many people have been helped by this.
ReplyDeleteAll the help I just read from all of your sweet commenters is making me cry. Such a fabulous community you've created.
ReplyDeleteI'm of no help on what you're struggling with, but I totally get you on the lack of compassion you experienced. Some people just don't have people skills.
hugs and smooches dear Karen
My friend, I know you don't want pity - and I don't "pity" you as, that word does not seem right - but because I feel like you are a true blue friend, my heart just hurts for you. And I'm sorry. That doctor WAS awful to deal with - it wasn't just the news you were receiving. It is so hard to understand some of these things we go through in life.
ReplyDeleteI'll be thinking of you today.
Go to this link to see more of Austin's story. It really is fascinating. He only heard music for the first time this year. He was born profoundly deaf. Hope it inspires and more so, I hope you can find some answers.
ReplyDeleteTia
http://www.latimes.com/local/la-me-c1-deaf-director-20131105-dto,0,1168131.htmlstory#axzz2jmtSPomy
I don't know anyone that has undergone this procedure, but I've sure heard of it and seen some medical shows on it.
ReplyDeleteJust to let you know, blog posts are showing up MANY HOURS after bloggers are posting them. This post is still not showing on my dashboard, I had to click my blog list.
Thanks for sharing this
ReplyDeleteI have no advice or input of any kind
I have a ringing in my ears all the time which is very annoying
Karen - I just read your post today.
ReplyDeleteI knew you had hearing problems but not to the extent you do.
How you've coped for so long says a lot about your perseverence and fortitude.
It's a damn shame those doctors and specialists led you on... you never thing they're going to, that they're all there 'for you' but obviously they are not.
There are no words of advice here, just letting you know I'm thinking of you and hoping somewhere down the line there is an answer.
I hope someone responds to your post with some positive news for you.
Your friend..
-Joan-
www.mvobsession.com
I have known several people who have spent thousands on hearing aids that stop working. My SIL has tubes out in her ears still at the age of 55. My other SIL is now deaf in one ear because of a viral infection!!!! My heart goes out to you, Karen...hang in there!...:)JP
ReplyDeleteKaren, I have an acquaintance that I have kind of lost touch with. She had this procedure done and while she did experience some problems she can hear and she was totally deaf for about 10 years I think. I will see if I can track her down and put her in touch with you.
ReplyDeleteMy hubby had brain surgery and is totally deaf in one ear and has some impairment of the other ear. I know how frustrating it is for him but at least he can hear most things-just not tell where they are coming from or what they are many times- God bless you- xo Diana
I have nothing to offer other than my prayers for you to find an answer and a doctor who knows what to do to help you out! And is nice!!
ReplyDeleteDoctor #3 is an idiot. He wasn't "off putting", he's an ass. I can sure sense the frustration in your words, and rightly so. Hopefully your new support group will be helpful.
ReplyDeleteIt does suck Karen. Seriously. I love the comment above mine. That #3 guy is an ass.
ReplyDeleteI am experiencing quite a bit of hearing loss as of late, but not to the degree you are. Sending you love...and hugs! Hope you find some answers in what others have been able to give you.
Karen, love and hugs to you! Last year I went through a horrific event with the ENT people I was experiencing hearing loss over night it seemed, long story short, after exams test ect. He said well you have a brain tumor, we will schedule you an MRI , or you've had a stroke, we will put you on baby asprin , not much we can do. Ect... Ect...ect.. I was in total shock. He DID give my prednisone which did help. Seems after teaching preschool for 15 yrs repeated exposure to high pitched sounds can lead to hearing loss and ringing in the ears. So to protect what hearing I have left I use my earplugs at work. But conversation in a crowded room is hard. And I love teaching....making choices is hard. So I am thankful for the hearing I do have. After my episode with ENT and yours I wonder what I didn't hear that they were saying ......
ReplyDeleteSharon
I was surfing for some new blogs to look at today and I happened upon yours because of the name of your blog. I was trying to find more info on your home and happened upon this post. Blew me away, tears as I type this. I do feel your pain. When I was in my early 20's, after what seemed to be a simple ear ache, the doctor scheduled me to have tubes put in my ears. That surgery never happened because when they went to do the surgery they discovered I had tumors in my ears. Both of them. I will not fill you in with the details because it is a file over 5 inches thick. I did end up having over 7 surgeries, the tumors kept coming back and they tried several different ways to stop them. In the process I lost my hearing about 80% in both ears, I went through a period of facial palsy due to the tumor being wrapped around a facial nerve. The surgery and tumors caused me to loose most of the hearing bones in my ears. All of this happened over a period of 5 years. Then it stopped, I refused to do the last surgery, they wanted to do it while I was awake. Gross to a twenty something year old. I said no, walked away. I was told I would never be able to hear normal again, I don't. After many years, the doctors wanted me to try hearing aides, they had to be specially made because I have to this day drainage in my ears and they have to be kept dry. It sucks royal that insurance does not cover aids, they should. I can say that they did change my life when I got them, I heard noises that I had not heard in years. The sound your foot makes when you walk, simple things you do not even think about. The hard part is that it does amplify everything, so all sound is louder. I do have a hard time in crowds and differentiating certain sounds. I went back to college, I got off social security disability because I did not want the disability to define me. I married, had children, owned a business. Yes it has been hard to deal with. I do not have just the ringing in my ears. I have from 1-5 or more noises in my head, ringing, thumping, screeching, drumming. They can drive me crazy at times, but I try to ignore them. It made me feel better to know I am not the only one who hates the doctors and the insurance companies who just want us to be guinea pigs to their experiments because they do not really know how to fix it. I have only read this post so I do not know it anything got better for you but I hope it has. Alaina
ReplyDelete