Auto Immune Inner Ear Disease - CI

I think April 13th or so, I have a mapping appointment on April 18th so hopefully I'll get to see it then.
 
I keep trying to add to the discussion, but some posts are "flagged" for the moderator, others are not. Why??

EDIT: Think I got around it, is it a post length thing???

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Nevermind my post now appears
 
lovezebras said:
Yes but the CI surgeon/CI audi themselves still have to approve you even if insurance isn't a problem and that's what I'm talking about. People with a fluctuating loss or single sided deafness are getting approved when there are people like me and ecp who have trouble and are severe and/or profound and struggle with hearing aids and we aren't getting approved.
Fluctuating and ssd isn't apart of the criteria for a CI so it kinda sucks that they'll make exceptions for some and not others is what we're saying.
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Do you have options for 2nd, 3rd opinions? I don't know how it works in Canada, but here in the States you are free to do what you want, pending insurance items you may pay more or less depending insurance preferred providers. But if you don't like what one doc has to say, you move onto one that you believe in and what will treat you how you wish to be treated.
 
Paullys50 said:
Do you have options for 2nd, 3rd opinions? I don't know how it works in Canada, but here in the States you are free to do what you want, pending insurance items you may pay more or less depending insurance preferred providers. But if you don't like what one doc has to say, you move onto one that you believe in and what will treat you how you wish to be treated.
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Nope you can't go to a diff CI centre unless you move. Surgeon referred me and suggested I get CI but CI audi is the one who approves and she said no. There are only 5 CI surgeons in all of Canada -_-
 
lovezebras said:
Nope you can't go to a diff CI centre unless you move. Surgeon referred me and suggested I get CI but CI audi is the one who approves and she said no. There are only 5 CI surgeons in all of Canada -_-
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WOW!!! Now I understand why it takes so long to get the procedure done. There are 10 CI clinics just in our metro area. Still trying to decide if I need a "second option" or basically just want to see if it's worth going to Mayo vs the clinic I normally go to. I liked the Dr there and the one audi was fine, didn't meet the other audi.
 
Paullys50=Which dr did your surgery? Did you meet with all of them at Mayo or were you more or less assigned to one?
 
Prefer not to get into details in a public forum. Since we can't PM shoot me an email at my junk mail account

philmccrackinjunk at gmail.com

Send me your contact info then I'll respond via my real email so we can chat privately.
 
Paullys50 said:
Couple of things, yes I am in the States, and I am very fortunate and grateful for the insurance that I do have.

Left ear: Completely Deaf
Right ear: Downward spiraling fluctuations.



I have seen multiple doctors at various institutions and all have said to me that sudden hearing loss is quite uncommon for both ears. You would think
The day I had my CI evaluation testing, my "good" ear just happened to be having a really "bad" day. I meet all the qualification criteria, don't remember all the testing but at one point during the test my speech discrimination was maybe 18%? If they were to re-test another day would I meet it criteria if I has having a "good" day? Guess we won't know.
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I can honestly say that I am a bit jealous that you were approved for an implant. I've had fairly quickly progressing SNHL in both ears for the past decade (I JUST turned 27) with MAJOR (30 to 70 dB (depending on the frequency)) losses every few years with NO improvement in hearing or speech understanding. However, when I had insurance that covered CIs, I was told I "was handling things too well" to really "need" a CI.
Now, my insurance doesn't cover CIs (in fact they have explicit policies that state that cochlear implants are not covered), my hearing loss in both ears is to the point that my hearing aids (the most powerful available) are only useful in select situations (quiet when I can see the speaker's face).

For me, it seems unfair that potentially people with single sided deafness have the opportunity to receive a CI in their "bad" ear after sudden hearing loss, while I am audiologically and functionally deaf in both ears but because my hearing loss is more gradual don't qualify. (I've had 4 major drops in hearing in the past few years where one ear lost at least 20dB in 3 frequencies and I know that a seemingly "minor" loss of 20dB can be disruptive and nearly impossible to adjust to. Last year my left ear lost what remaining speech understanding it had within two days. I'm still struggling with the loss of my "good" ear)

Not all cases of autoimmune inner ear hearing loss cause hearing loss in both ears. (http://emedicine.medscape.com/article/856313-overview)

I'm really not attacking anyone. Your good ear might deteriorate and that is a consideration for a CI. It is just that I've had bilateral PTAs of 95 to 120+ dB for the past 4 years with less than 40% speech discrimination.

I am pissed at insurance companies. Very pissed.

Maybe the fact that there is an autosomal recessive pattern of hearing loss that mirrors my hearing loss history has something to do with audiologists telling me that I am doing "too well".

since none of you know me in real life, I feel I must stress that me being "pissed" about something is (almost) NEVER directed at people.
 
Paullys50 said:
Couple of things, yes I am in the States, and I am very fortunate and grateful for the insurance that I do have.

Left ear: Completely Deaf
Right ear: Downward spiraling fluctuations.

The day I had my CI evaluation testing, my "good" ear just happened to be having a really "bad" day. I meet all the qualification criteria, don't remember all the testing but at one point during the test my speech discrimination was maybe 18%? If they were to re-test another day would I meet it criteria if I has having a "good" day? Guess we won't know.
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Personally, you should of been tested on a number of occasions if your good ear can change that much!

The fact that you got approved even when the doctors said that going deaf in both ears is uncommon has really pissed me off. People who are deaf in both ears should be given priority over someone with SSD!
 
maybe the CI team that evaluated Paul just felt like he'd be a good candidate. Like I said, each Ci team/center will have their own criteria and will make decisions by the case. Paul's getting the CI, but someone else with a similar case like Paul might not be. For those of you who are still being denied the implant even if you do fit the general criteria, there must be some reason your CI teams felt you weren't a good candidate. If it's possible, seek another opinion. Go to another clinic and see what they say.
 
It's more to do with ecp insurance rather then CI center!

LoveZebras CI center are just rubbish full stop and don't do the FULL tests available to find out why she is deaf. In Canada, you can't go to other CI centers.

I'm been approved but for other medical reasons, I haven't been implanted but that doesn't stop me being annoyed for other people that are struggling!
 
I know it's upsetting, I agree, but I don't think it's something to get pissed about. Different people have different resources. I grew up with no hearing aids, didn't get them until 22, AFTER I was adopted as an adult. The only reason I got a CI is because of that as well. I never would have had the insurance or money to get hearing aids or a CI on my own. The first clinic I went to for a CI accused me of lying because they couldn't easily explain my loss. It didn't make sense and therefore I was a faker. Went to the second CI center and beyond ruling out fractures, they didn't bother trying to find out "why?" they just fixed it with a CI. Every center is different, every person's hearing is different, and every person's resources are different. Not being able to switch CI centers in Canada is part of living in Canada. Sucks but it is. Also more strict requirements since it's free. We really can't compare any two people's experiences, approvals or denials, etc.
 
ecp said:
I can honestly say that I am a bit jealous that you were approved for an implant. I've had fairly quickly progressing SNHL in both ears for the past decade (I JUST turned 27) with MAJOR (30 to 70 dB (depending on the frequency)) losses every few years with NO improvement in hearing or speech understanding. However, when I had insurance that covered CIs, I was told I "was handling things too well" to really "need" a CI.
Now, my insurance doesn't cover CIs (in fact they have explicit policies that state that cochlear implants are not covered), my hearing loss in both ears is to the point that my hearing aids (the most powerful available) are only useful in select situations (quiet when I can see the speaker's face).

For me, it seems unfair that potentially people with single sided deafness have the opportunity to receive a CI in their "bad" ear after sudden hearing loss, while I am audiologically and functionally deaf in both ears but because my hearing loss is more gradual don't qualify. (I've had 4 major drops in hearing in the past few years where one ear lost at least 20dB in 3 frequencies and I know that a seemingly "minor" loss of 20dB can be disruptive and nearly impossible to adjust to. Last year my left ear lost what remaining speech understanding it had within two days. I'm still struggling with the loss of my "good" ear)

Not all cases of autoimmune inner ear hearing loss cause hearing loss in both ears. (http://emedicine.medscape.com/article/856313-overview)

I'm really not attacking anyone. Your good ear might deteriorate and that is a consideration for a CI. It is just that I've had bilateral PTAs of 95 to 120+ dB for the past 4 years with less than 40% speech discrimination.

I am pissed at insurance companies. Very pissed.

Maybe the fact that there is an autosomal recessive pattern of hearing loss that mirrors my hearing loss history has something to do with audiologists telling me that I am doing "too well".

since none of you know me in real life, I feel I must stress that me being "pissed" about something is (almost) NEVER directed at people.
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You need to talk to your employer about CI coverage. The insurance company doesn't decide what is and is not covered, your company does. Sometimes they can grant an exception and get you covered.
 
also if it is an insurance issue, sometimes the CI company and/or your CI team can be a big advocate and get the insurance company to change their mind and approve. Have you tried asking the implant manufacturer's insurance department or the Ci center for help with appealing the insurance company's denial?

I can understand the frustrations. I've wanted a CI for 10 years, but kept running into road block after road block before I was finally able to get one. most of it had to do with insurance coverage issues or lack of coverage. AB was going to help me appeal to Medicaid, but then I decided to hold off for a couple of years until I got my Medicare coverage to try again, and that worked out.
 
DeafAlex said:
Not being able to switch CI centers in Canada is part of living in Canada. .
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Well seeing as I can't just pick up and move to the states and be a us citizen that isn't really my fault now is it. I don't choose to live in Canada I don't have a choice. You are fortunate to live in a country that's medical sector is miles ahead of Canada's because we don't have even a 1/3 of the specialists that you all have. If it was sooooo easy to get up and move to the states I would have a long time ago.
 
I didn't say anything about you moving to the US?!? I was just comparing to explain my point that all circumstances are different.
 
lovezebras said:
Well seeing as I can't just pick up and move to the states and be a us citizen that isn't really my fault now is it. I don't choose to live in Canada I don't have a choice. You are fortunate to live in a country that's medical sector is miles ahead of Canada's because we don't have even a 1/3 of the specialists that you all have. If it was sooooo easy to get up and move to the states I would have a long time ago.
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I don't think DeafAlex in any way tried to tell you to pick up and leave Canada as a solution. I don't understand why you are defensive of her statement, after all the comments are factual, and the statement did include sympathetic comments due to the differences between the healthcare systems. I can understand the frustration, however it's not fair to fire back at DeafAlex, after all we are all hear for the same reasons.

Hell, in reality Europe is the place to be! They are leading the way with CI procedures for SSD patients. And there is a push in the states to start doing the same. Google it you'll find articles about it. Europe leads the way with a lot of medical advances, and the USA lags behind due to FDA approval process so there is always somewhere better.

Being that this forum is available on an international level, differences in healthcare will play a role in the discussions and opportunities people have. That is the reality of it, hate to say it but it's true.
 
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