You can’t help me hear better why??

wendy charcoal CI

Me. Image by Me.

I broke down and sobbed at the ear doctor’s office yesterday.  I actually left there sobbing…in the elevator, out the door, in the parking lot…had to stop in the parking lot and catch my breath because of the sobs…then into the car…….

I could not believe what I had just heard!

Not from the doctor, that hurt but I wasn’t surprised.  He mainly said, I had to live with it.  I didn’t realize I was hoping for more until he said it.  but I was crushed.  I was about to cry then.  But I held it together, I knew I would cry later, but just a little…a little mourning once again.  Knowing that I may live with this constant vertigo forever.  The fact that my worst feat was coming true….well just a little.  It isn’t fast vertigo, that is my worst fear.  I will not build up that fear.  After all I may not live with this forever.  I do not know the future!   but the wound was open, and it was raw….I was acknowledging these feelings…it hurt.

Then we went to set up an appointment with the Cochlear Implant audiologist.  Thank goodness, I really need my CI’s adjusted.  When ever I have a Meniere’s attack my hearing goes wonky.  They refused to see me!!!!!  What The *%&^??

First the doctor had said that they didn’t see people who went from Charlotte to Duke to have their Cochlear Implant surgery because they do the surgery there.  OK? well that makes sense I guess….still that is not right.  So you choose to have your surgery somewhere else, then we will not help you after your surgery.  They want to people to have their surgery there that badly?

But he said, since I lived there and moved here, maybe it would be OK.  So they went to set it up….NOPE.

Then they came back saying it is their policy not to take transfers from anywhere in NC.  What?  Charlotte is on the far side of NC.  NC is a VERY long state.  If someone moved here from the far side of NC they couldn’t get their CI’s adjusted here?  That is like 10 hours away.  What?  That is just messed up.  What if my surgery had been done poorly and I needed help?  Oh I’m sure they would help me then, that would be surgery.  This is just seeing the cochlear implant audiologist. I still don’t understand.  They get paid for this.  It’s not like it is free.  The appointment last for 1 1/2 to 2 hours.  It’s expensive.  Frankly it feels like discrimination.   You are one of those people from Duke, we don’t like your kind here.  I am just floored.

So, they say I will have to ride 3 hours to Duke to get my CI’s adjusted.  Yes, that is just torture for someone with vertigo!!  Then to have the CI adjustment is very hard on me.  It always makes me sick and I get a migraine.  Then I will have to endure the ride home…another 3 hours.  (of course if I have vertigo really bad it will take us much longer, we may even have to stay the night somewhere.)  Ugh!

I am at a loss.

There is no other CI clinic in this city.

Right now we are making an appointment at Duke.  I can’t see me actually going to this place after this anyway.  How could I trust my care to them?

I’m complaining to the manufacturer who makes my CI’s because I was told by them I could get my adjustments done there.  I’m sure they have no idea that this place is refusing patients who have Advanced Bionics Cochlear Implants.  (or any other implant from another clinic)

I am really beside myself and this is starting me to spiral out of control.
I am going down…down…down…

I am working hard not to let it.

I am tired of feeling that everything is out of my control.
I can’t even make calls about this.

I want to call that audiology department and find out why this is a policy and see if they understand my situation.  I feel this is malpractice, but according to the Audiology society where I could file a complaint it isn’t.  It is their business practice rules and that isn’t considered something I can lodge a complaint against.  It is discrimination!  I am being discriminated against because of where I had my surgery.

I just can’t believe this.
Normally I would never think of going there after this.

I would want to make them pay, but I wouldn’t let them touch me.

but I don’t want to go so far away every time I need to be seen.

*sigh*

I don’t have a choice.
I can’t do anything, and let’s face it, Stuart is not good at these things….and this stupid office had no way for a deaf person to get in touch with them!!!!

I can’t email them!

I’m not good on a computerized caption phone.  There is always such a delay, and there is always words that are translated so wrong.  I gave up.

I want to scream. guess I could since our neighbor moved this past weekend.  LOL

OK….

I’ve vented enough.

That’s my predicament
on which I will lament.

Wanting to take care of me
but have to depend on he.

How do I reconcile myself to this half-life?
or do I continue to wrestle with this internal strife?

Many of life’s offerings I willingly accept,
but loss of all control, I’m not so adept.

This is today, I can’t predict tomorrow.
let me, wipe away these tears, let go of the sorrow.

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35 thoughts on “You can’t help me hear better why??

  1. I send love and hope . Had mine 9 months ago . Read the Power of intention by W .Dyer and let’s talk sister . Mike

    Sent from my iPhone

    >

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    • Mike
      You had what 9 months ago? did you get a CI? I’m familiar with W.Dyer, haven’t read the Power of Intention, but know his work.
      He has nice thoughts. 🙂

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  2. That is INSANE. Hippocratic oath, anyone? I thought doctors couldn’t surprise me anymore with their egos and lack of empathy, etc. I never would have imagined this though. Makes no sense either (even financially). Angry for you.

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    • Allison..
      Yes!! They would get paid for this!
      But they are so busy trying to coerce people here into getting their surgery done here instead of going elsewhere. It is crazy! But I tell you, if someone had their surgery here the people at Duke would take care of their CI’s! dumb policy!
      have been meaning to talk to you….did you read…vertigo all the time? I’m in the boat with you lady.
      love to you.

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  3. I am so sorry, dear. What is wrong with these people?

    One thing you can do is go online anywhere they have a presence and complain publically. Businesses tend to get apologetic when their reputation’s on the line. Do they have a Facebook page? A Yelp entry?

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  4. Seems there is some board they are responsible to…and I would find out which one and complain. Even if you don’t want to go back after this, and I don’t blame you, it could make them wake up.

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    • I looked into reporting them to a board, but they only go after the individual audiologist. they don’t get involved in the “business practices”. So who polices that? and if the audiologist writes those? but I’m sure it is the clinic’s policy…I know I wouldn’t work for a place like that. thanks honey…and I would go back there for this…I’m a fighter.

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  5. Wish there was a DISLIKE button, that is more appropriate. After all you you have been through…now this? The world is absolutely insane, and the craziness and unkindness is everywhere. I am the proof. I hope things get better soon, I’m so sorry for you. Love, Laurie

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    • It is just stupid. They are simply trying to coerce people into getting their surgery there, if they don’t they are up a creek in this town, and they is simply unacceptable.
      The fact that I can’t drive is also a big thing. I’m starting to think…maybe there is some way I can get the American Disabilities Act involved. I’m disabled, I can’t drive to Durham to get my CI’s MAPed. just thinking out loud here….hmmm. thank you. not taking it personally. it’s a huge place, it’s a big corporation for sure.
      there is a lot of bad in the world but there’s a lot of good too. and we can spread that. BIG HEART

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      • The ADA act may be a good way to go. I know when I had an issue with a clinic in Iowa I got action when I went to the overseer for the state. I didn’t even have to go full blown on a complaint before they did something.

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  6. I am so sorry you’re going through this. You should certainly be able to get your implants programmed at any facility who can work with AB patients. If they have the software, they should be able to see you and get your MAP straightened out. Are there any other audiology clinics in the area that program? Greenville? Wilmington? (I don’t know where you are so I can’t be more specific). I certainly hope you can figure it out and, when you go to Duke, let them know what happened. Perhaps they have other clinics that will help out.

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  7. Wendy, for what it’s worth, here is the info for the NC Board of Examiners for Speech-Language Pathologists and Audiologists. http://www.ncboeslpa.org/ I certainly agree that office is engaging in an unethical practice, but that doesn’t necessarily mean it’s illegal. The Board might be able to tell you if it is, though. There’s a form linked from the main page where you can file a complaint. I know you don’t want them to touch you now, but people only change their ways when forced to. Your complaint might change it for the next person and it’s empowering to tackle problems and injustices. 🙂 I thought complaining to the manufacturer was an excellent idea too.

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    • Thank you Dara,
      I did look into complaining to the Board for Audiologist, but they don’t get involved with “business practices” and I guess this would be considered that. If I were an audiologist I sure wouldn’t work for a clinic with those policies. and you are right, I do have my hackles up and am willing to fight about this. It is hard when you can’t use the phone. I often give up on things because of that. I have sent in an email to Advanced Bionics about this, I wonder if they know that this clinic is refusing to see their customers? This company has excellent customer service, I can’t imagine they would be OK with this.

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  8. My heart goes out to you. I can’t believe (really, I don’t want to believe) that this is an acceptable business practice. It involves the care of a patient (health care), not some accounting thing of how much money to spend on supplies (business practice).

    Have you also considered getting legal advice since it very much seems discriminatory on a horrific level? Is business that good that they can turn away patients? Maybe hearing that you’ve already talked to a lawyer might convince them to change their minds.

    Or maybe a tv or newspaper might want to pick it up and make it public? But then, if they are the only one around, do you go there and “trust” them to do it right? Or, with the potential bad publicity, do they make sure they do it right? And would you be willing to go that route?

    Sorry, I had to go back and read it again because I can’t believe that you would be told that crap. Since you had the surgery at Duke, can they give you some options of what you can do so that you don’t have to travel there again and can they get involved?

    What a clusterf**k on their part.

    I hope you can get this resolved soon.

    Hugs!

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    • Thanks a lot Sunshine!

      I don’t see how Duke can help really. It isn’t really proper for them to get involved with another clinic’s business practices. My audiologist there was outraged, but she can’t really do anything.

      I have an appt at Duke next Friday, but was just told that I can’t travel that far yet because of my back. wonderful. So I will have to live with the warped hearing for a while longer. joy. 🙂 eh…no biggie. I’m ok with it.

      I’m determined to try to fight this. We will see how it turns out. I’ve gotten in touch with Advanced Bionics, and I just emailed and requested a professional patient advocate to see if I can get some help on that route.

      We’ll see.

      Hugs back to you!

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  9. As sad as this situation is, I hear as bad (or worse) from everyone I know with serious disabilities. I just heard from a relative on Friday and wanted to fly out there and beat some sense into the medical community. But it would be a very quick fix and when it was done it would be back to the bad old ways. The only thing I can suggest is getting a professional patient advocate who can deal with the situation. The only problem is that unless you can learn to do what a patient advocate does you need to find one you can get along with. I know that someone like me who is “in your face” makes you uncomfortable. It is that very characteristic that makes a very effective patient advocate. Wishing you the best.

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    • actually Marsha, in this instance I would be very “in your face”, I just can’t be since I can’t talk on the phone or drive and go up there by myself. My husband is not an ‘in your face” type of person.
      Getting a professional patient advocate is good idea, I just emailed the association and asked if they could help me. thank you.

      Liked by 1 person

      • Only someone who is willing to take a medical professional to the mat is going to be able to make an impact. Sad, but true. Generally that is not the patient – the one who happens to be ill, because they can’t actually get well enough to be that advocate.

        I hope you find a good patient advocate with whom you can form a bond with, because this person is going to be a long-term part of your life.

        I happen to hate conflict. I learned to live in a world full of conflict – and be able to be more knowledgeable and intimidating than the other side in order to assure better outcomes. Somebody’s got to do it. Sometimes I miss it.

        You’re welcome.

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  10. All excellent suggestions: ADA; patient advocate; disabilities/medical lawyer; a hearing friend with the same spunk as you to be your ears. Is there a “subtle” way to find out if there have been other complaints about the clinic? Is there some sort of reporting process for complaints? (The answer has been given in the comments and your response I’m sure!
    When I wrote a letter to the supervisor medical board in the province I was living in at the time about my treatment by a doctor, I knew no action would be taken, but I wanted his behavior on file.

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      • DizzyChick, my problem is that I’m in Charlotte now. I love my audiologist at Duke. If I could easily travel that far I would love to keep going to her all the time. It simply would be so much easier to go to someone here in Charlotte. Traveling all the way to Durham, or Raleigh…even further, is just so difficult. 1 – I can’t drive. and 2- riding with my vertigo is torture.
        But the people here won’t see me because I didn’t have my surgery here. It’s simply uncalled for. Charlotte Eye Ear Nose and Throat do not have good business practices where CI patients are concerned.
        thank you though.
        w

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        • I see 😔 I’m going to check with Carolina Ear & Hearing to ser if they have presence in CLT. They come to Greenville thetefore I dont have to drive. But no implants as of yet. Just know that you have a team behind you cheering you on!

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          • I didn’t know you are in Greenville now. thank you for cheering me on. I’m working on it. Right now I want to fight for this not just for me but for everyone who they turn away. Hearing loss is huge in this country right now, with the veterans coming back with hearing loss and the baby boomers getting older, we do not need audiology departments having selective business practices discriminating against who they will see.

            I will be posting soon. I’m focusing on some self care right now. thank you again!

            Liked by 1 person

    • This is so different. There isn’t anything a doctor or an audiologist has done, so I can’t complain to the board about them. This is the business practices of the office. I complained on Angie’s list…there were no other complaints on there. You know there are very few people who will really speak out. and look at how hard it has been for me to find any way to speak out. I’m still searching for just the right way. I’m not sure if a friend can do much because of HIPPA. I don’t know if they can speak on my behalf at all. I have requested a patient advocate, I’ll see where that gets me. Advanced Bionics is going to try to do something, but said they don’t know if they can. It’s a pain in the ass frankly.
      oh my friend…..you know how frustrated I am about this. ugh.

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  11. I’m guessing the clinic you have issue with (somehow I thought you were in Eastern NC) and it looks like they are the closest with Duke and Greensboro being the next closest. There’s a clinical center in Spartangburg (Audiology Associates of Spartanburg). That’s at least closer than Duke, but they also say Cochlear Americas. Looking through AB’s website, it looks like you only have one option for Charlotte. I would imagine that could change with enough demand, but I’m sorry you’re dealing with that.

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    • Ginny…..yep, only the one option in Charlotte. AB is talking with them but they don’t know if they can do anything. I’ve requested a Patient Advocate, again I don’t know if they can do anything. Seems like it is hard to change a clinic’s “business practices”. However, I might have a case since I am disabled and can’t drive. The clinic here in Charlotte is only about 3 miles from my house. I can easily get to it. But getting to any other clinic is impossible without a lot of help. That is where we can call in the ADA….hopefully. We’ll see.
      If I can’t get help with this, I know I’ll give up the fight. I can’t do it by myself. thank you for your support.

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  12. Good job letting out the frustration, the opposite of what I do pretty much which is bottle up until I want to throw up. You are SO STRONG and are going to battle through this tough time the way you do with all your other tough times. Nothing is written in stone and I’m here for you.

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  13. I am FURIOUS at so-called health “professionals” who don’t understand the situations of the people they are supposedly treating, thinking, I suppose, that they have signed on for a career as predictable as a salesman’s — and that business decisions can be made with capitalist imperatives with no more care about the people involved than if they were stock brokers.

    My friend and colleague’s mentally ill son Jeremy was murdered by the police because his long-term doctor not only kept him under-medicated, he refused to squeeze him in, despite the fact that he called for an emergency appointment THREE times in the month prior to his death because he knew that there was something seriously wrong with his medication. “Sorry, nothing available this month.”

    DENTISTS squeeze in emergency appointments when people are in pain – and their other patients are expected to understand why the doctor is “off schedule.” Even chiropractors will see a patient with whiplash immediately.

    ADDers get “fired” by their doctors for missing too many appointments, despite the fact that lack of time and problems scheduling are part of the condition for which they’ve come for help — and despite the fact that reminder calls are not made as a logical part of the “professional’s” practice.

    A friend with chronic pain as the result of an inoperable brain tumor (among a great many other problems) was robbed and his medication stolen – narcotics, prescribed. He had to go through withdrawal and anxiety over the the very real risk of a stroke from the sudden cessation of his medication, as well as dealing with horrible pain until it was “time” for his next prescription for oxy – as if ANY chronic pain patients would balance their books by selling the medication that makes their lives possible. They are NOT drug addicts!

    When patients with chronic depression become “non-compliant” because they can’t get out of bed or off the couch, their therapists refuse to continue to treat them. What the fu*k is THAT about?

    AND NOW, I read that an audiologist wouldn’t see you because ” it is their policy not to take transfers from anywhere in NC.” How do they sleep at night? Why don’t they change things? I actually despise that doctor and that clinic for their inexcusable “business” practices. I wish I were there to come with you to INSIST that you be seen if they wanted me to go away. I wish the press would do an expose. Their reputation deserves to be tarnished, forcing them to change cruel and disgusting policies of this sort.

    Would you be willing to post the name & address of this establishment (and the audiologist) so your followers can write letters of protest to them and to the press?

    I have lost faith in the ENTIRE medical and psychiatric “professions” – and, for today, I beyond depressed by the horrid state of our world and the cruel decisions made in the name of money.

    God help us ALL.

    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    “It takes a village to transform a world!”

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