where do i start

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stueyyy

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I dont think it has been done, if it has they were guinea pigs...but i have been offered a double cochlear implant..........

I really dont know if im going through with this, ive been given 4 weeks to decide, but to me thats abit quick, i wont be rushed....

I WILL have complications, 1st i would have to have bone removal and also rebuilding before operation can start..

Yes it usual for CI'S to have dizzyness etc etc, but im told in my case the % is up to 60%, and it is possible that it might not work....

Then i think hey what have i to lose, im deaf anyway, have severe tinnitus both ears, headaches everyday, not all day but everyday none the less. severe dizzyness ive had everyday for past 7 or 8 years+.

Is it worth the pain?

I really am lost here, im open for anything that could help me...and advice.

my history

born deaf left ear.
many many operations throughout the years averaging 2 ops a year right up til 12 weeks ago.

i nearly dies with abcess on brain becasue of weeping ear, yes weeping travelled upwards.

I was 1st person in Uk to have cavity built to stop weeping travelling upwards.

1 year later cavity broke down, i had rebuild.

i had labrinthitis in left ear had labrinthectomy, made dizzyness worse.

i had labrinthitis in right ear, had labrinthectomy, labrinthectomy leaves people deaf, so now im profoundly deaf.....

in between all this im ops for this and that plyps, mastois, bone removals etc etc etc etc.

12 weeks or more ago i had HONG KONG flap a protection or something, anyway now ear doesnt stop weeping at all its 24/7.

All i can now is OVER TO YOU LOT, IM OPEN TO ADVICE...

My brain is saying NO at moment......

thansk people

Stu
 
Mod's Note:

Thread's moved to proper location.

(From Introduce yourself to Hearing Aids & Cochlear Implants)
 
Not a WHOLE lot of people CI candidates get bilateral ci's at the same time but I know of a few here who have. It's not totally uncommon
 
Well medically it is possible to still have drainage from canal 12 weeks after having Hong Kong flap proceedure. The success of this operation is because the vasculature (blood supply) the flap provides. If you have had mastoidectomy, chronic abcesses with cholesteatoma and subsequent ear drainage of course, I would be willing to theorize the healing capacity is decreased in your case because of the longevity and degree of problems with cholesteatoma. I wonder why it take so long for physician to decide to do Hong Kong flap- it is not a seriously difficult surgery and has 90% success rates.

I would be very very cautious about bilateral implants with this dealio u have. Tell me this is only one side have the problem with cholesteatoma or both. Just by reading it sound like the disease process and subsequent proceedures cause you to be full deaf in your other ear. If the origianally deaf ear never had the infections, abcesses, surgeries, removal of bone, creation or drainage cavity etc, why not just do one, less chance for complication. But then again, if this is problem you have always have with the cholesteatoma and both eustachian tubes then I wouldn't do it if it were I.

Either way good luck with healing and I do hope for the very best for you, it sounds like you have dealt with enough already. Get Well soon.
 
have severe tinnitus both ears, headaches everyday, not all day but everyday none the less. severe dizzyness ive had everyday for past 7 or 8 years+.
Click to expand...
On the other hand Doug, it could help with the tinnitus and the dizziness.
 
:dunno: I am not CI specialist. I was mostly thinking along lines of risk of serious medical complications cuz of preexisting problems outweighing the potential benifis. With having a labrynthectomy, I don't know how dizzyness improved with CI....never encounterd someone with both. Some patient I care for have had labrynthectomy and end up on vertigo meds forever. Yes I would be interested in the tinnitus and vertigo benefits, definately. It is so hard to guess on cases that are so individualized such as stuey, so I am just trying to objectively view the whole picture. Very good point though DD
 
I would be worried about the physical side of things. It has only been 12 weeks since you had surgery on your ear and they want you to make a life altering decision in 4 weeks? I am all for CI's, have just one more batch of testing before I am scheduled for mine (only one) and I was given loads of time to think things through and research, and come here asking questions.
Is there a doctor you trust? Not perhaps one that you have dealt with for ear trouble, but any knowledgeable doctor that can help guide you in making a healthy choice based on you and your history? As for the success rate, that is on a case by case basis and depends on a lot of factors. :hmm:
 
As he's based in UK i guess its South of England Cochlear implant centre (where i go) or the one in London Grays road... If it's SOECIC, who's your consulantant?

Sorry i can't help much as i don't suffer from problems prior to CI, However I do agree with Doug as Infection is worrying.

PM me if you want.
 
4 years on

hohDougRN said:
Well medically it is possible to still have drainage from canal 12 weeks after having Hong Kong flap proceedure. The success of this operation is because the vasculature (blood supply) the flap provides. If you have had mastoidectomy, chronic abcesses with cholesteatoma and subsequent ear drainage of course, I would be willing to theorize the healing capacity is decreased in your case because of the longevity and degree of problems with cholesteatoma. I wonder why it take so long for physician to decide to do Hong Kong flap- it is not a seriously difficult surgery and has 90% success rates.

I would be very very cautious about bilateral implants with this dealio u have. Tell me this is only one side have the problem with cholesteatoma or both. Just by reading it sound like the disease process and subsequent proceedures cause you to be full deaf in your other ear. If the origianally deaf ear never had the infections, abcesses, surgeries, removal of bone, creation or drainage cavity etc, why not just do one, less chance for complication. But then again, if this is problem you have always have with the cholesteatoma and both eustachian tubes then I wouldn't do it if it were I.

Either way good luck with healing and I do hope for the very best for you, it sounds like you have dealt with enough already. Get Well soon.
Click to expand...
I had the 1 Cochlear done and then it was extracted as it didn't work, so ends my journey to hear, but ops i hope also will stop..
 
Had Cholesteatoma surgery last Nov. (left ear) and still have drainage...or "weeping ear"....surgery on the right is forthcoming, I'm putting it off as long as possible, tho. I turned down the CI because of the problems I'm having. ...Sorry things didn't work out for you!..My way of thinking, Life is what you make it...so make it good! :wave:
 
smiles

Angle1989 said:
I am really sorry things did not work out for you.
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Hey no problem, Myself, Consultant everyone knew it was difficult and may not work, that why it took everyone concerned a year to decide if it was worth the amount of money involved, They decided I should have that chance after my history with ear and brain OpS. So it didn't work, Ive had both ear canals skin grafted over now, as no point looking in as there isnt anything there to look at, All completely Obliterated..

So I soldier on..Funny I say that my Tinnitus is soldiers marching non stop 24/7 both sides lol...

Good luck to everyone else who has C.implants though:cheers:
 
hope all works

rockin'robin said:
Had Cholesteatoma surgery last Nov. (left ear) and still have drainage...or "weeping ear"....surgery on the right is forthcoming, I'm putting it off as long as possible, tho. I turned down the CI because of the problems I'm having. ...Sorry things didn't work out for you!..My way of thinking, Life is what you make it...so make it good! :wave:
Click to expand...

Aye that isnt nice it eats away bones etc behind ear drum, but be good to have it sorted though Robin :) better sorted than left, I've had that both ears long time ago now I think I was in early teens..

But we carry on forward, no point looking back we try to SMILE..and SOLDIER on Im always saying that, yet I have probs stepping outside my front door at minute lol..
 
reminded me

rockin'robin said:
Had Cholesteatoma surgery last Nov. (left ear) and still have drainage...or "weeping ear"....surgery on the right is forthcoming, I'm putting it off as long as possible, tho. I turned down the CI because of the problems I'm having. ...Sorry things didn't work out for you!..My way of thinking, Life is what you make it...so make it good! :wave:
Click to expand...

Hope you get that discharge sorted though, I had discharge for years and caused Abscess on the brain when I was 19 and again when I was 22 caused by other ear, but Im still here..I was 1st person in UK to have Cavity built after Abscess to stop discharge travelling up again...So please get it sorted Robin :)
 
Wirelessly posted (Blackberry Bold )

Based on what you've said - I'd wait on the CI ... Make sure that everything is medically and anatomicall stable for a year, then re assess.

Yes there's a chance CI might help with the tinnitus, but considering the scope of your other ear issues, I'd think you might well end up with severe complications. By this I mean in terms of healing, infection and your body physically rejecting the implant.

I'd wait til your ears are stable, infection and drainage free then get multiple opinions on if CI is a good option for you, then do a unilateral implantation first (with possible bilat implantation later)
 
stueyyy said:
Hope you get that discharge sorted though, I had discharge for years and caused Abscess on the brain when I was 19 and again when I was 22 caused by other ear, but Im still here..I was 1st person in UK to have Cavity built after Abscess to stop discharge travelling up again...So please get it sorted Robin :)
Click to expand...

Yes, Stueyyy....see the doctor again May 11th...As for the infections, have been ongoing for years and years.along with the pain....I've adjusted but have my bad days...look forward to the good ones tho'!....Let you know that right after the Cholesteatoma surgery, I went home....in a lot of pain for 2 weeks...back to the doctor, and had to be put into ICU for a Bacterial Infection....took them 8 days before they found the right antibotic for it, then was in the Neuroscience Unit.....I was fine for a few months afterwards (infection antibotics)...but seems the infection has come back...fatigued a lot...swollen glands (neck and shoulder blades), hard to lift my arm at times....had Cholesteatoma stones also...but the good thing is, my tinnitus seemed to get a little better!...I can fall asleep better now. My equibalium (balance) off off at times also.

But there are sunny days ahead....hope you can manage to get outside and enjoy the weather when possible!...Keep in touch...rockin'
 
yeah

rockin'robin said:
Yes, Stueyyy....see the doctor again May 11th...As for the infections, have been ongoing for years and years.along with the pain....I've adjusted but have my bad days...look forward to the good ones tho'!....Let you know that right after the Cholesteatoma surgery, I went home....in a lot of pain for 2 weeks...back to the doctor, and had to be put into ICU for a Bacterial Infection....took them 8 days before they found the right antibotic for it, then was in the Neuroscience Unit.....I was fine for a few months afterwards (infection antibotics)...but seems the infection has come back...fatigued a lot...swollen glands (neck and shoulder blades), hard to lift my arm at times....had Cholesteatoma stones also...but the good thing is, my tinnitus seemed to get a little better!...I can fall asleep better now. My equibalium (balance) off off at times also.

But there are sunny days ahead....hope you can manage to get outside and enjoy the weather when possible!...Keep in touch...rockin'
Click to expand...

:angel:We soldier on Rockin :angel: and I will come on here twice a week so I keep in touch..
 
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