My Meniere's and now a new life with Cochlear

Well where to start, it has been a while since i've been on here. ;D
My side affects from bi lat menieres are pretty much non existant apart from near total deafness for the past 2 years, aids weren't giving me any relief. I am self employed and the past 2 years have been very hard. We toyed with the idea of a cochlear about 1 year ago but not long into the testing and stuff my hearing regained some sound again, not a great deal but enough for docs to not want to do a cochlear implant My incoming sound was only 12% in my left and 22% in my right.
anyway the slight improvment only lasted a few months and then fell off the radar again, with my work being so busy ENT visits and things just kept getting pushed aside : until advise from my hearing aid audiologists was to go and see 1 of the top cochlear docs here in Brisbane Australia, a different ENT/ Cochlear doc who I went to see a year prior.
His first words were, Stop stuffing around with your life and just get a cochlear done, you need some normality in your life. I'm only 37.
So that was it, the whole Cochlear thing was making my head spin with worry, about it maybe not working and then having no where to go.
Exhaustive testing followed and many docs, audiologists and phsycologist and a lot of $$ later, I had a date set for my Cochlear operation. The 1 major thing that helped put my mind at ease was talking to a slightly younger cochlear patiant who suffered more loss then me but from a much younger age.
So my operation was on the Thursday before our Good Friday Easter holiday here, so it gave me a 5 day rest without work over Easter. It was 5.25 on the clock when they wheeled me into theatre, and it was about 7ish when I first woke up, I was up walking around just after 8pm that night. 1 thing I knew I wouldn't have was dizziness, long story as to why but I don't have functioning balance nerves basically from various operations and injections.
I was slightly wobbly but mainly because I was bandaged heavily on my head and the hospital light was dull. But I felt good, slightly sore but not bad.
Well by 2am the nurse was hitting me with morphine to kill the pain, it was like a base ball bat was belting me in the head.
Friday arvo I left hospital, felt really good but sore, just tired.
The next week was quite wrestless trying to sleep as putting any pressure on the right side was very painfull.
but it slowly improved.
12 days after my op we were booked in for switch on 8) 8) 8) a very anxious time.
All I can say is WOW this thing is incredible, after the initial tuning and testing which was about an hour I was turned on to hear sound/ voices through my new life changing bit of gear for the first time.
From the moment I was turned on, I understood every single word spoken to me, but very squeaky and helium balloon like, but I had no trouble understanding it. ;D ;D ;D ;D ;D
3 hours after switch on I made a phone call to my mum to see if I could talk to here I was that confident I could, well it worked, then I made a call home to my 2 young sons and spoke to them :'( :'( :'( :'( it was quite emotional
It was hard going ,but considering I hadn't been able to use a phone for over 2 years, it was great.
The following day on my follow up appointment my audiologist was astounded with me using the phone, only the 2nd person in her 15 years of doing Cochlears that has been able to do that, my speak recognition on the 2nd day was already 95%.
It has now been nearly 4 weeks since switch on and my life has changed and turned around like I had never imagined.
I have heard more and been able to speak to people and hear them more in the past month than I had in the past 2 years. 8) 8) 8)
My instant result is quite uncommon and my name has been mentioned a lot since switch on in the Cochlear world for docs etc. I was hoping I might get to this level after 6-12 months not 1 month.
Sound clarity is great, I'd say 80-90% of things sound normal to me, it's just trying to identify certain sounds that have been unheard for years.
Loud and harsh sounds for about the first 10 days or so were very watery, like a running creek sort of sound, this watery sound has improved so much now that those loud harsh sounds now sound like what they are, it just took time for the brain to sort it all out.
For anybody considering a Cochlear, I cannot recommend it highly enough. It has changed my life.

Sorry for the long winded story. ;D

 

Great result!

 

A very happy story !!

 

I am thrilled for you! Thanks for sharing this story and giving others hope.

 

Fantastic story and shows the positive potential of modern technology. Was any of this covered by some sort of medical insurance or national healthcare? I wonder if it's covered by many/any insurance systems in the US. Continued good fortune, improvement, and success.

 

Great post. Good job!!!! Much suscess from here on out with all things.

 

Who me:

your story is one of inspiration and hope,
37, small children, deaf, no vestibular function and suscessful business owner.

Could you share more about your journey, it could provide great hope for those who are sick, suffering, confused and lost in this horrific disease that takes so much and Ives do little?


You the man, I am loving austrailia more and more.

Godspeed

 

Thanks,

And thanks again for you know what!!!!

 

What a great read about this champion, if you are a newbie or struggling with mm please read this gentlemans story. It is inspiring.

Intrepid providedyhe link to his earlier post where ge talks about his experiences.
Start on page 5 and read from the bottom up with his first post.

Truly truly truly amazing and uplifting.

Thanks intrepid for providing that. Please read it from the beginnig starting on age 5 where he first introduces himself an talks of his life and experience with mm and how he ended up here today with this wonderful story. The final destination.

A great read!!!!

 

Thankyou all for your replies. It has been a long time since I have been on here.
A bit more of my life with bilat MD so far.
Up until 2 years ago I was racing motorcross, and enjoying offroad riding, the motorcross bit was a huge surprise to me as to how my eyes handled it, I had no blurred vision or balance problems, yet chasing my kids around the yard was at times hard with trying to focus with my eyes. If I fell off the bike it did take a second or so to work out which way I was facing if it was a hard unexpected fall.
Walking for me in semi -dark areas is very hard and at times distressing. I need to feel my way along a wall until I can find a light switch, or i'll just sit down and wait, a nasty trick my wife sometimes plays on me is to turn the light out as I'm half way up the hall way.
Driving a vehicle even at night time is no problem for me. I can't walk a straight line if I tried even in full daylight. I don't notice i'm wandering but others do. ;D
I did however have a major accident on my motorbike about 2 years ago which resulted in 3 days in hospital and some very stern words from my ENT who I hadn't told about my bike racing.

Some doctors have been shocked to find I had the strep injections, Not Gendimiacin (sp) this treamtent was lab rat stuff and for me personally I beleive it has done what it was designed to do and that was relieve me of severe vertigo. As you all know this is the worst feelin of helplessness you can have and is undescribable to a healthy person.
For me it has been a god send. I have not had a severe vertigo attach which has made me sit or lay down for more than 5 minutes and no vomiting at all for the past 9 years or so. I have had no side affects from the injections I mentioned in that link. This 1 treatment alone changed the way my life has unfolded.
Unfortunately nothing can be done to presserve or restore hearing with Md as we all know.
Yes I have had the odd emotional roller coaster with it all over the last 20 odd years, yes I truely wish I never got hit with the MD stick, but if it wasn't me it would be someone else who possibly couldn't have copped with it.
Until my hearing loss in my left ear got so bad aids wouldn't work, I lived and worked a normal life as best as I could, I have never held back from trying to do things or achieve new goals. I have never let MD control me, I just learnt to not panic and to stay calm if /when I had an attack. Thankfully now I would be lucky to get a very mild dizzy spell once or twice a year, only a few seconds in duration.

To date the Cochlear has been the most incredible life changing thing for me, even our good customers have been in to our business to see me and ask how I am going.
Before my cochlear you would have had a better conversation with a dead cat than with me, my hearing was that poor.
I have had tinitus in my right ear ever since my MD hit so that is about 20 years, and the left side for 10 or so years, ringing and sounds ranging from a little hum to a freight train. Well since my cochlear operation this has stopped, still get slight ringing in my left but the right side tinitus has pretty much stopped totally, for the 12 days or so after the operation I did get a lot of noises and ringing as they obviously stirred the inner ear up, but since switch on this has stopped, probably due to the stimulation the cochlear has provided in that ear.
Nearly 4 weeks later since switch on the tinitus has nearly stopped, just a very slight hum every now and then.
1 of the tests some of you might be familiar with is the cold/ warm air being blown onto your ear drum to test for balance/ vertigo. This is 1 test they performed before my op to see how I would possibly feel after the operation, with dizziness. I informed the lady doing the test that I doubted she would get a reading on her machine as I have had various operations , injections and stuff to stop vertigo, I don't think she beleived me and I think she thought her machine was broken as it did not register 1 single thing, she did the test 3 times and did not get 1 result ;D ;D, This then gave the docs the info they needed that I already knew, that I would not get dizzy from the operation. They charged me $350 for 25 minutes blowing air into my ear. I told them my wife could have done it for nothing but they didn't see the funny side of that. :


To anybody considering a Cochlear I can't recommend it highly enough. I have the nucleus 5 implant from Cochlear Aust the original makers. Obviously there is a lot of testing and criteria you have to meet to be accepted.
My right ear was chosen because I still hold out hope that 1 day my left ear might recover, seeing as it has fluctuated for 20 years, if it doesn't no big deal seeing as my Cochlear has been so successful, my audiologist asked me last week if I would do an implant in my left, but I doubt very much I will with my result.
I sacrifised about 20% of residual hearing in my right ear to gain about 90%, I am now totally deaf in my right ear from the operation when my CI isn't hooked up. My left ear is not far behind, only very loud noises get a reaction on my left side.

The Australian Federal Government classes a CI as an implantable prosthesis, so if you wish to have 1 fitted as a private hospital patient as long as you have private health cover for a minimum of 1 year you can get health cover to pay for some of it. If you want to be a public patient it can take 3 years or more as the Gov only provides a limited number a year for free.
For me we had top private cover, the entire CI itself was covered, it was some of the doctors/ hospital fees, and all the testing and now the tuning that is not covered, roughly up it has been a $40,000 operation, of which we have paid $10,000 ouselves, the best $10,000 we have ever spent.


For those who suffer badly from MD please keep positive, I know it is an extremely stressful thing to have, it is also a very unknown illness, I don't think Doctors know much more about it now than what they did 20 years ago.

1 thing I must stress is that my instant success is a rare thing, it no doubt will make the people at Cochlear very happy as it has changed my life. It is a long road when you choose cochlear but there is light at the end of that tunnel.

Cheers

 

Who Me

Thank you for the detailed history. Frankly I was blown away by the motocross racing with menieres and near total deafness. I knew they made Aussies tough, but they must have given you an extra large pair of brass ones. I was also surprised at the cost of the implant, but I don't know why I would be given that virtually every medical procedure to fix one part of your body costs and arm and a leg from another part. At least you had the government health care support. I don't know what the story would be in the US since I haven't gotten to the point of considering it, but I know that US Medicare would NOT pay for standard hearing aids for two of my uncles and the only way they got help is through the Veterans Administration because they both had served in the military.

In any case, continued good luck, good health and good hearing.

 

Who Me,

thanks, amazing story and one of inspiration,

I agree poppaharley, racing motorcyclyes not only deaf, but also with no balance system/function due to intramuscular strep.

A champions of champions in the mm world. Only 37 and has had it since he was 16. The youngest case ever recorded in Austrailial at the time of his diagnosis. According to the link provided by Intrepid in her post.

 

Great story Who and way to go! You are an inspiration - thanks for sharing that.

I've had my Nucleus 5 activated for 2 weeks today and, while not getting quite the results you are, it has been an instant improvement. Everyone has noticed it. The sounds I'm getting are faint and robot like, but it adds a lot of clarity to what I can hear and my understanding has gone way up. I got 62% word recognition after one week and my audi thought that was very good. You are right - it makes a huge difference.

FWIW - The cost here in the US was a little north of $90,000 so far - $82,000 of that for the 8 hours I was in the hospital. Luckily I have good insurance and shouldn't be on the hook for more than about $5K.

Wonder why your pain level was so high - mine wasn't severe at all.

 

This should maybe go in the suscess stories file.

 

Pretty good almost 70% speech recgonition after 1 week bob, good stuff.

This is a great read top to bottom.

 

I was expecting the pain, so it didn't come as a surprise, also probably doesn't help that I can't sit still for more than 5 minutes.
My last speach test was basically 100%, but that's in a quiet room, noisy rooms are still very good

 

Who me,

What is you biggest obstacle today, is it reading, driving, can you swim?

What effected you more hearing loss or loss of balance?

 

hi Bulldog. I can do all of that no problem. just don't close my eyes under water. I like to push my boundaries, but in a safe way. I never let MD get in my way with racing motorbikes, have also raced go karts in that time, that was a tiny bit harder mostly due to the vibration of the cart and only being 1/2 inch off the road. But was still enjoyable.

Wow, Um my biggest obstacle today would be getting out of bed when I need to, when you can't hear a thing you sleep well, especially on weekends, ;D ;D during the week I am too wrestless to sleep in, got to much on my mind. My Cochlear is my new best mate, in gets turned on at 6am and unhooked and recharged about 11pm everynight, it is on every waking second I am out of bed.
I have never let MD control me, I know it sounds hard for people who are suffering this horrible illness, but I never curled myself up and let it rule me.
I can't stress it enough to sufferers to ensure your work mates, bosses, family and friends know about what you're going through and how they can help you if you suffer an attack in their presence, if they know what is going on then they won't panic, which is the best thing for you to have someone calm around you. Even if it is just someone to hold your hand whilst you try to sit down or lay down.

 

Here it is Emily.

 

So appreciate you taking time to share your story with us, Who Me. Erases some of the fear should the "worst" happen. It has been a rough road, I'm sure, but so glad you are still around to offer hope to anyone who might need a shot of it.