Mary Gorton

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Hi, I just had a Med El CI put in two weeks ago with hopes to gain some hearing and relief from my terrible tinnitus. I have NF2. For those who don't know what that is, it's a genetic disease that the hallmark of it is bilateral vestibular schwannomas (acoustic neuromas). I had my left side's tumor debulked last summer, and went deaf. The first Surgeon said he kept the auditory nerve intact and that my face and hearing would be back to normal in 6 months. No such thing. He was so unfamilar with NF2. Anyways, now I'm being treated at Mayo in MN by a team that is well-acquainted with NF2, as it's very rare. I was told I was an excellent candidate for a CI, and the Med El specifically, because I wouldn't need remove it for MRIs, which I will be getting at least once a year for the rest of my life. I'm 36 by the way.

Anyways, I went in for activation yesterday, and nothing. Today we went 4 times the volume for each of the 11-12channels, and went 'live' and cranked it up t 120. I was told that people usually get sound at 15-30. Anyways, it's a failure. My nerve was too far gone. It's a big bummer, as I was really excited and pushing for this all spring, now I have all this stuff in my head with nothing to show for it.

Has anyone had one removed due to failure? The audiologist said the ENT(surgeon) probably would say keep it in, but I'm not fond of the implant disc above my ear...especially if it's not functioning.

When I have to deal with my other tumor, we'd most likely put an ABI in during tumor resection. I'm told when that happens, due to the nature of NF2 tumors, I would be left completely deaf, and I've accepted that someday I will be. Anyways, my main question is if anyone has had one removed...

Thanks in advance,
Mar
 
are you learning sign?
I took an 8 week community course. I want to take a four course ASL program at the local community college. I'm at tennis player, and my long-term goal is to teach tennis to the deaf
 
I took an 8 week community course. I want to take a four course ASL program at the local community college. I'm at tennis player, and my long-term goal is to teach tennis to the deaf

ok great.

the tirck in gaining ASL fluency is to sign every day, just sign, to everyone. what ever vocab you now know start singing it with everyone every day. when you speakie you can sign at the beginning no plm. the classroom has its place but sign is learned and acquired where you are, period. this helps you gain retention for the signs, and helps get those around you used to it themselves.
and they will soon experience how useful sign is for them and you.
for those around you just toss them one sign a day thats it...and in no time that quickly builds, a month 30 signs, 3 months 90....ect etc...

on the tennis court and off..
Sign will set you free!
 
She is asking if anyone had CI removal, though.

there are few people who had CI removed. I think it's called "revision".
I hope somebody who underwent the revision is still here, and will share their experience with you.
You probably already searched the net for articles, but here's one anyway:
http://www.audiologyonline.com/articles/revision-cochlear-implantation-834

And I am very sorry the results were unsuccessful :(
It is a bummer :(

Fuzzy
 
She is asking if anyone had CI removal, though.

there are few people who had CI removed. I think it's called "revision".
I hope somebody who underwent the revision is still here, and will share their experience with you.
You probably already searched the net for articles, but here's one anyway:
http://www.audiologyonline.com/articles/revision-cochlear-implantation-834

And I am very sorry the results were unsuccessful :(
It is a bummer :(

Fuzzy

yes and her CI has failed, so the obvious questions for those who want this girl to have a good life is if she is learning sign, and to offer her the support she needs in that.

the snake oil tech hasn't worked.
nows it time for the real solution to the plm, which sign.

shes going to teach Deafie and in a few years we are going to have a Deafie at the big shindig they do, wimblbum or something..
anyway..
we need to help her..

GO FOR IT!
 
I take exception to snake oil. It was a medical procedure and no one wants deaf people sacrificed. Only 10% of the world signs: So I guess you are not concerted about communicating with the other 90%.
 
I take exception to snake oil. It was a medical procedure and no one wants deaf people sacrificed. Only 10% of the world signs: So I guess you are not concerted about communicating with the other 90%.


what are you on about? don't respond in this thread with another issue of another thread. respond to that issue in that thread. pls.
i communicate with everybody i want too..
and i'm Deaf

this has person is learning Sign, as she stated. so..
 
1. yes and her CI has failed, so the obvious questions for those who want this girl to have a good life is if she is learning sign, and to offer her the support she needs in that.

the snake oil tech hasn't worked.
nows it time for the real solution to the plm, which sign.

shes going to teach Deafie and in a few years we are going to have a Deafie at the big shindig they do, 2. wimblbum or something..
anyway..
we need to help her..

GO FOR IT!

1. but it could have worked, too :)
2. wimmb... what? :dunno2:

Fuzzy
 
1. but it could have worked, too :)
2. wimmb... what? :dunno2:

Fuzzy

but it didnt.

the tennis big shindig wimbibum..in england or new jersey im not a fan i dunno.
they have a big plate for the trophy
 
but it didnt.

the tennis big shindig wimbibum..in england or new jersey im not a fan i dunno.
they have a big plate for the trophy

Wimbledon...in England. It's one of the 4 grand slam tournaments for the best in the world. I'm just a club player and coach. It would be a dream just to be a spectator at one of the slams:)
 
no kiddin.
well...never know, but it starts at the club level so...as they sign...
GO FOR IT!
 
but it didnt.

the tennis big shindig wimbibum..in england or new jersey im not a fan i dunno.
they have a big plate for the trophy

wimbibum.. ok. just so you know you could have simply used google.

"but it didnt" - no it didn't however - one small albeit important clarification.

It wasn't CI fault it didn't work. CI was all fine and dandy, ready to work. so was Mary.
what went wrong, the surgeon who performed the surgery thought he left good nerves while there were none.
so, the whole implantation was based on nerves unsuitable for CI.
It was like trying to sew back the severed hand, only the hand was long, long dead, oops.
Do you see the difference?

Fuzzy
 
wimbibum.. ok. just so you know you could have simply used google.

"but it didnt" - no it didn't however - one small albeit important clarification.

It wasn't CI fault it didn't work. CI was all fine and dandy, ready to work. so was Mary.
what went wrong, the surgeon who performed the surgery thought he left good nerves while there were none.
so, the whole implantation was based on nerves unsuitable for CI.
It was like trying to sew back the severed hand, only the hand was long, long dsead, oops.
Do you see the difference?

Fuzzy


Yeah, the first surgeon had told me that my nerve was intact along with my facial nerve. The tumors lie on the 8th cranial nerve where the vestibular(balance), facial, and hearing nerves are. All were affected. He promised that my face and hearing would be back to normal in 6 months. He promised me that twice. I still can't move half of my left side of my face, totally deaf on that side, and still have some balance issues. The ENT at Mayo thought I was an excellent candidate for a CI since the tinnitus is so intrusive, and that I have another tumor that is highly threatening my other side. I fear the day we have to deal with that. I also still have 1.3cm left from the first tumor.

So, my nerve is intact, but it was damaged beyond use due to loss of blood supply during the first surgery. That's why the CI didn't work. I knew it was a possibility. I'm bummed right now, but not devastated. I may get more upset as time goes on, but it is what it is, I guess.
 
wimbibum.. ok. just so you know you could have simply used google.

"but it didnt" - no it didn't however - one small albeit important clarification.

It wasn't CI fault it didn't work. CI was all fine and dandy, ready to work. so was Mary.
what went wrong, the surgeon who performed the surgery thought he left good nerves while there were none.
so, the whole implantation was based on nerves unsuitable for CI.
It was like trying to sew back the severed hand, only the hand was long, long dead, oops.
Do you see the difference?

Fuzzy


regardless the fact is it failed, period.
we can dance over the reasons but its all pointless really so..
im not going o argue over the varied reasons why it didnt work ...
as i know what will work, Sign, and thus thats it.
 
regardless the fact is it failed, period.
we can dance over the reasons but its all pointless really so..
im not going o argue over the varied reasons why it didnt work ...
as i know what will work, Sign, and thus thats it.


Mind you, I can still hear perfectly out of my right ear, yet someday it will go too. That is why I want to learn sign proactively while I can still hear, and even teach deaf students while I can still hear.
 
Mind you, I can still hear perfectly out of my right ear, yet someday it will go too. That is why I want to learn sign proactively while I can still hear, and even teach deaf students while I can still hear.

awsome!
 
Yeah, the first surgeon had told me that my nerve was intact along with my facial nerve. The tumors lie on the 8th cranial nerve where the vestibular(balance), facial, and hearing nerves are. All were affected. He promised that my face and hearing would be back to normal in 6 months. He promised me that twice. I still can't move half of my left side of my face, totally deaf on that side, and still have some balance issues. The ENT at Mayo thought I was an excellent candidate for a CI since the tinnitus is so intrusive, and that I have another tumor that is highly threatening my other side. I fear the day we have to deal with that. I also still have 1.3cm left from the first tumor.

So, my nerve is intact, but it was damaged beyond use due to loss of blood supply during the first surgery. That's why the CI didn't work. I knew it was a possibility. I'm bummed right now, but not devastated. I may get more upset as time goes on, but it is what it is, I guess.


I am so sorry. I can only imagine how it must felt learning about the disease, then the mistake with surgery and all :(
I am very sorry about the tumors, too. I learned about Schwannoma long time ago from the TV show "Mystery Diagnosis",
(a lady had a severe migraines due to Schwannomas in the brain. maybe she too, had NF2?) then I read about it some articles online,
so I have an simplified idea what it is.
I hope one day the doctors will take care of it for well for you and no more will grow. Fingers crossed!
Most of all I am so impressed with your positive attitude, Mary, and wonderful spirit! two very enthusiastic thumbs up! :yesway: :yesway:

Now - being deaf really isn't half as bad as it sounds, (lol, pun), particularly for a person who is late deafened.
One does get depressed, frustrated, irritated in the beginning as it is a major life overhaul - the communication difficulties, the job challenges, the social challenges, the sense of isolation and so on. Particularly once your hearing loss is progressing
and you're no longer catching up in conversation you begin to feel excluded, and realise your circle of friends starts getting smaller
and smaller.
BUT, it will! change with time, as you learn ASL.
You will re-invent yourself and realize it's like moving into foreign country. btw I am an immigrant
(from Poland) so I can relate to the experience quite well, as I left all my life behind at once - my family, my friends, my job, my language etc :)
now in Canada I have new family, new friends (including some of those who also immigrated from the city I came from),
had new, satisfying job, learned new language, and love love love my new country! which is not to say it was all totally painless.
So will you. You will learn ASL, become fluent, you will find new ASL circle of friends, reinvent anew in your job, set new goals - a whole new exciting world opens for you now.
While lack of sound may sound (lol, again) overwhelming now, it is not as bad, I promise. sometimes is it, but mostly most lol not :)

Fuzzy
 
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ive known a couple of Deafie sform poland, interesting..
 
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