2 days

Shoshana said:
PROGRESS!!!!

I walked into the office an hour early (better early than late right?), A young very nice woman walked out into the waiting room, she wore a badge so I knew she worked there--she handed me a sticky note that read "Do you want a Sign Language interpreter?" and then she started signing to me! Given, her sign was very basic and choppy but I felt comfortable and at ease. I told her it would help me if there was an interpreter.

At exactly my appointment time (surprise! most places you end up waiting past your time!) they took me back to get the vitals done. I sat in room and the woman came back in and introduced herself as the audiologist for this Doctor. I was so surprised! At that time the interpreter showed up (I was not at all inpressed with that Terp and hope I dont get her again!) anyways, the audiologist began asking me questions about the implant and I went on explaining why I got it, and everything since.

She was very understanding when I told her "Id rather not hear than deal with the list of stuff I deal with--Its not worth it, I was not broken...but now I am". I think she thought about it because her face looked like she felt kinda bad.

The Doctor came in, clean cut, no facial hair and my ideal person to lip read, again was surprised. He asked why I came, and I handed a list of all my symptoms, Triggers and other key information. He read it and asked a few questions. I started crying. He told me that is seems like it is related to the implant! I felt like I was dreaming....after FOUR years, my words didnt fall on "deaf" ears (no pun intended lol), someone was listening to me! I thanked him over and over for listening to me--because everyone else was pushing me in circles and excusing the implant because of who implanted me. He asked if I wanted it taken out and I told him yes. He went on to explain that because no one knows the cause of my hearing loss, and because of the uniqueness of my sympotoms, ETC ETC. then flat out will not be able to pre-determin if explanting will help reduce or cure the attacks from happening. I told him if explainting reduces the frequency or anything then I will be happy! He explained that they dont know if it might make my condition worse. So he told me he was going to research, contact other specialist and refered me to see another one in OCT. as well. It seems like no one can put their thumb on it with any definate information.

I have an appointment with the other Dr. October 4th--I am happy finally people are listening and trying to find answers to make me well.
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you are happy final because wonderful I am glad of hear you hear share thank ;)
 
Thanks guys! I have to say I am scared of the possibilty it might make it worse :( I can barley handle the symptoms I have now--they control my life everyday. I want to do it properly, let them do research, see other Doctors, and seriously look at the risk. If I had any idea this would of happened when being implant of course no one would of been for it. But I just wouldnt be able to live with it worse than it is already now :( I hope Doctors can do research and give me definates and I hope they find a way to remove the implant and reduce my attacks.
 
Frisky Feline said:
same deal for doctor to implant CI that may make this condition worse. Like what she has it now. I am sure that removing the CI from her and she WILL feel much better. Can you image some foreign object in you when you knew it is in there and a feeling of annoyance.
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Well, you have to careful with that. One time, I had dizziness and vertigo consistently for 6 months. I would almost fall off the bed (which is a big deal since it was on a loft). The doctors had no idea why. Now, this was before I got implanted. Imagine if I got implanted before this happened? Of course, I would automatically think it was the CI. Weird symptoms out of the blue, foreign object, it's GOT to be, right??

The most likely reason why I experienced vertigo and dizziness is calcium deposits floating in my ear canal. I probably hit my head playing ultimate and the calcium came off the walls of the cochlear and floated in the liquid. The pieces would bang against the nerves, throwing my balance off.

So I understand about MAKING sure that CI is the reason. After all explanting is still surgery...
 
Daredevel7 said:
Well, you have to careful with that. One time, I had dizziness and vertigo consistently for 6 months. I would almost fall off the bed (which is a big deal since it was on a loft). The doctors had no idea why. Now, this was before I got implanted. Imagine if I got implanted before this happened? Of course, I would automatically think it was the CI. Weird symptoms out of the blue, foreign object, it's GOT to be, right??

The most likely reason why I experienced vertigo and dizziness is calcium deposits floating in my ear canal. I probably hit my head playing ultimate and the calcium came off the walls of the cochlear and floated in the liquid. The pieces would bang against the nerves, throwing my balance off.

So I understand about MAKING sure that CI is the reason. After all explanting is still surgery...
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First of all, my apologizes for my strongly approach. I do agree with you about the things that can happen to the head before the ci. It applied to my hub. He had those dizziness, tinnius and veritgo since he was a toddler. Doctor was hoping that having a CI helps to reduce those headache but it is all the same, a little worse. It can relates with his aging or CI itself. :dunno: Indeed, you re right about it. One thing is i know some people who can handle the foreign object inside their body and some don't, like me. =X

yes surgery is still a risk for both non medicial necessary and medicial neccesary. =(

Shoshana, have you ask the doctors that they need to research and be sure not to make things worse. So what they are concerned about, nerves, cochlea or other things that may be damaged if another surgery? they need to tell you what things that can be risk and for you to make decision not to go for it or go for it. I know you have already had appoinment within a month. so just start to study your own routine this month and see if it improves without going for the other surgery or feeling worser than before without the second surgery. I hope doctor knows what they are looking for, fixing it right and not worse. That helps to be aware and be prepared.
 
Another thing - you're young so maybe it's not likely - but have you had a thorough blood work-up lately, including checking for thyroid issues?

I suffered some minor dizziness and actually lost my balance and fell outside, twice - once on my own driveway, and once on a busy street corner in D.C. Talk about embarassing!

Turned out I had an under-functioning thyroid gland, and that was causing the dizziness and loss of balance. I've been on the meds now for about 12 years and have not had any recurrence.

So just saying - you might want to get an overall checkup and blood panel done, if you haven't already, just to rule out anything like that being an issue for you.
 
Shoshana said:
Thanks guys! I have to say I am scared of the possibilty it might make it worse :( I can barley handle the symptoms I have now--they control my life everyday. I want to do it properly, let them do research, see other Doctors, and seriously look at the risk. If I had any idea this would of happened when being implant of course no one would of been for it. But I just wouldnt be able to live with it worse than it is already now :( I hope Doctors can do research and give me definates and I hope they find a way to remove the implant and reduce my attacks.
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I am experience on scared lots of nervous I am very scared risk on cope on! I am screw up on my cochlear implant, I told on nurse fault because medication help cope my health because nurse don't know happened I was almost to scared seizer serious I alive on remove my implant whew I am almost to panic attack something I was truth dizzy and on how feeling medication risk dangerous conflict to my mind!
 
same deal for doctor to implant CI that may make this condition worse. Like what she has it now. I am sure that removing the CI from her and she WILL feel much better. Can you image some foreign object in you when you knew it is in there and a feeling of annoyance.
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I hope so too,
but this is not about me.

This is about the doctors worrying about making her condition worse by removing the implant.
Shoshanna needs to address these questions, and know what her stance on this is.

I researched what are the causes of the vertigo after implantation in the first place. The whole thing is not that simple.

That's why Shoshanna needs to be prepared for questions like "what if the explant will make your condition worse? will she still want to have the removal done?" etc.
And will she want it indeed? That's why I asked. Not for myself, for her.

I do hope and have a gut feeling the removal will make Shoshana feel better.
But the doctors doesn't give two sneezes about my gut feeling - they do about what Shoshana says to them.


Fuzzy
 
Wirelessly posted (Backberry)

Audiofuzzy said:
same deal for doctor to implant CI that may make this condition worse. Like what she has it now. I am sure that removing the CI from her and she WILL feel much better. Can you image some foreign object in you when you knew it is in there and a feeling of annoyance.
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I hope so too,
but this is not about me.

This is about the doctors worrying about making her condition worse by removing the implant.
Shoshanna needs to address these questions, and know what her stance on this is.

I researched what are the causes of the vertigo after implantation in the first place. The whole thing is not that simple.

That's why Shoshanna needs to be prepared for questions like "what if the explant will make your condition worse? will she still want to have the removal done?" etc.
And will she want it indeed? That's why I asked. Not for myself, for her.

I do hope and have a gut feeling the removal will make Shoshana feel better.
But the doctors doesn't give two sneezes about my gut feeling - they do about what Shoshana says to them.


Fuzzy
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Fuzzy, I think the point here is that the doctors cannot know what the future is. It seems to me that she has already asked all the right questions and is comfortable with the risks.
 
Cheetah said:
Wirelessly posted (Backberry)



Fuzzy, I think the point here is that the doctors cannot know what the future is. It seems to me that she has already asked all the right questions and is comfortable with the risks.
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exactly doctor folllow up, doctor tell you information

because we can't do it because doctor experiment and professional otherwise worth doctor!
 
Shoshana, I am sorry I can't find your complete medical history
can you tell me if you had any dizziness/vertigo before your CI?

And after you complained of that post- CI, what specifically did they diagnosed you with - Meniere's, or Benign Paroxysmal Positional Vertigo (BPPV)?
Or even something else?

And if it was BPPV, did they try any manipulations on you in order to try and move the "ear rocks" into other space, like this here:
BPPV -- Benign Paroxysmal Positional Vertigo

Fuzzy
 
Fuzzy, I think the point here is that the doctors cannot know what the future is. It seems to me that she has already asked all the right questions and is comfortable with the risks.
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I understand that, but if Shoshana for example is determined to remove the implant even if the risk is high it may make it worse,
a lot depend on how she will talk to her doctors.

The doctors will question her and question her, and if they see she hesitate-
they may back out.

That's why I am asking her - is she sure what she wants, and "what if"?

I know from my own experience, with drs you must be well prepared.

Fuzzy
 
Audiofuzzy said:
That's why Shoshanna needs to be prepared for questions like "what if the explant will make your condition worse? will she still want to have the removal done?" etc.

Fuzzy
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reworded for a better perspective:

That's why anyone needs to be prepared for questions like "what if the implant will make your condition worse? will they still want to have the implant done?" etc.
 
Yes.

The doctor must know the patient not only knows, but understands and accepts the possibility that things in fact may go worse, not better.

I just didn't want to influence Shoshana's feelings on the removal,
but I wanted her to know that
whatever she says will make an impact how the drs will react.


Fuzzy
 
Audiofuzzy said:
Yes.

The doctor must know the patient not only knows, but understands and accepts the possibility that things in fact may go worse, not better.

I just didn't want to influence Shoshana's feelings on the removal,
but I wanted her to know that
whatever she says will make an impact how the drs will react.


Fuzzy
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It seems that she's very determined in getting them removed.
 
Shoshana said:
PROGRESS!!!!

I have an appointment with the other Dr. October 4th--I am happy finally people are listening and trying to find answers to make me well.
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:cool2: So :D to hear about your progress. That sounds like a dream visit and the start to finally finding some relief. I hope it continues to go well and in the right direction.
 
Audiofuzzy said:
Shoshana, I am sorry I can't find your complete medical history
can you tell me if you had any dizziness/vertigo before your CI?

And after you complained of that post- CI, what specifically did they diagnosed you with - Meniere's, or Benign Paroxysmal Positional Vertigo (BPPV)?
Or even something else?

And if it was BPPV, did they try any manipulations on you in order to try and move the "ear rocks" into other space, like this here:
BPPV -- Benign Paroxysmal Positional Vertigo

Fuzzy
Click to expand...

I never got a dignosis. They can not rule out meniares because the CI makes test incinclusive.

I didnt have any of these issues before implant.

Also no one can explain my hearing loss, no one knows the cause or reason which is why they tell me now they worry about explanting because they have no idea of anything.
 
DeafRaptor said:
:cool2: So :D to hear about your progress. That sounds like a dream visit and the start to finally finding some relief. I hope it continues to go well and in the right direction.
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Thank you! But truth I am very scared now. I do not think I can handle worse symptoms than this :( I want to see what the doctors can tell me, and what my mom oppinion. I do not use the implant at all. I do not understand why Doctors who are "so smart" can not help me, can not even give me answers
 
Shoshana said:
Thank you! But truth I am very scared now. I do not think I can handle worse symptoms than this :( I want to see what the doctors can tell me, and what my mom oppinion. I do not use the implant at all. I do not understand why Doctors who are "so smart" can not help me, can not even give me answers
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Really! I understand you are feeling scared, Doctor expert, because awkward how feeling not easy! you cope on your think and symtoms, I know you want to remove on implant! I Know experience on struggle it
 
I do not use the implant at all. I do not understand why Doctors who are "so smart" can not help me, can not even give me answers
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I am so sorry Shoshana :(

I researched a bit the subject of implanting /explanting.

This is difficult to predict b/c of the many possible cause as to the post-CI dizziness/vertigo.

For example, during the implantation one of the things that may cause vertigo is the bone dust particle from the drilling to fall into the cochlea.

Another, the dislocation of the certain part of the ear into where it should not be caused by vibration.
I don't know whether or not it is possible to fix these.

The electrode itself probably may be a cause if it grew together with the cochlea?, the removal then is difficult and separation it from the cochlea
(if at all possible) may actually worsen not help the vertigo? I suppose?.

I am sure there is more causes than that.

I suppose your doctors will try and first find out what happened during the surgery in the first place...

But I am hopeful for you, that you'll get your wish, and will feel better!

Vertigo after Cochlear Implantation : Otology & Neurotology

Positional vertigo and cochlear implantation. [Otol Neurotol. 2007] - PubMed - NCBI

Fuzzy
 
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