Ci removal

Shoshana said:
Yea, I seen a nerologist who said he cant rule out anything because he doesnt work with CI or know if its that effecting me, so he dismissed me also after the test had no result because of implant. Maybe my best bet is to go back to the implant Dr. and tell him to just take it out? I did this before a few years ago, but he said it will be worse if they take it out because they have to recut the nerves...that is why I didnt do it sooner.
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smithtr was having all kinds of side effects, as well, and they fought him about having it taken out. He noticed improvement when they finally did, though. They just don't want to admit that some people are worse off than when they started after the implantation.
 
Shoshana said:
Yea, I seen a nerologist who said he cant rule out anything because he doesnt work with CI or know if its that effecting me, so he dismissed me also after the test had no result because of implant. Maybe my best bet is to go back to the implant Dr. and tell him to just take it out? I did this before a few years ago, but he said it will be worse if they take it out because they have to recut the nerves...that is why I didnt do it sooner.
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Did you see 2nd opinion with different doctor who is familiar with CI?
 
jillio said:
You are welcome. I'm just going to suggest that it shouldn't make any difference how your family feels about it. You are the one that is deaf, and you are the one that is entitled to decide the best way for you to live as a Deaf person. Nor should it be your obligation to meet all of their needs.:hug:
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Thanks Jillio :hug: It is hard though because communication will be difficult with my family because no one signs, also its hard to read my dads lips because he is not clear. Im sure it will work itself out and we will find a way to communicate (I do not see them learning sign though).

for a long time it hurt me to have an implant emotionally, like they were trying to fix me....like I was broken....Being Deaf does NOT make me Broken! I think my parents just try to do the best for me, but they know nothing about Deaf Culture and thought this would be best.
 
Shoshana said:
Yea, I seen a nerologist who said he cant rule out anything because he doesnt work with CI or know if its that effecting me, so he dismissed me also after the test had no result because of implant. Maybe my best bet is to go back to the implant Dr. and tell him to just take it out? I did this before a few years ago, but he said it will be worse if they take it out because they have to recut the nerves...that is why I didnt do it sooner.
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Thats just bs. Sure they cut the nerves but its not that damaging. Mine all regrew back a few months after my last surgery, some areas, I cant really feel (on the scar line) but its nothing compare to having an explant and be free of pain.
 
Jiro said:
:jaw:

I smell a very expensive malpractice lawsuit that will make you a very very rich gal. Have you seen neurologist? Received a CAT/PET/MRI scan? Taken blood test?

EDIT - just saw your reply above.
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but how can be malpractice? Also yes Ihave had cat scan, EEG, blood work, Balance testing, ETC ETC. (cant get MRI with CI) but no results from any
 
Shoshana said:
Thanks Jillio :hug: It is hard though because communication will be difficult with my family because no one signs, also its hard to read my dads lips because he is not clear. Im sure it will work itself out and we will find a way to communicate (I do not see them learning sign though).

for a long time it hurt me to have an implant emotionally, like they were trying to fix me....like I was broken....Being Deaf does NOT make me Broken! I think my parents just try to do the best for me, but they know nothing about Deaf Culture and thought this would be best.
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I'm sure they did what they thought was best for you, but they just failed to recognize that they were looking at thing from the perspective of what was most convenient for them. There will be a way to communicate.
 
Jiro said:
Did you see 2nd opinion with different doctor who is familiar with CI?
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before Implant I saw two diffrent Doctor for oppinion...is that what you mean?

I recently saw an ENT who was also no help--he was a student of my implant DR...go figure!
 
Shoshana said:
but how can be malpractice? Also yes Ihave had cat scan, EEG, blood work, Balance testing, ETC ETC. (cant get MRI with CI) but no results from any
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If they discover that the implant wasn't done properly when they explant, it could be malpractice. It might be a good idea to have a different surgeon do the explant.
 
bbaseballboy123 said:
Thats just bs. Sure they cut the nerves but its not that damaging. Mine all regrew back a few months after my last surgery, some areas, I cant really feel (on the scar line) but its nothing compare to having an explant and be free of pain.
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yea, like he explain to me that recutting the nerves will cause more vertigo because the nerves will react like loose wires or something...that scared me to think of MORE vertigo...I hate vertigo.
 
jillio said:
If they discover that the implant wasn't done properly when they explant, it could be malpractice. It might be a good idea to have a different surgeon do the explant.
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how would they know this VS my body just rejecting it or something?
 
So I spoke to my Mom (who would be most supportive) and she told me I was the one who wanted the implant! Wow, I dont remember this...but then again I dont remember much and was struggling to fit in. Either way, She is coming back down to Florida and is going to help me look for another CI doctor to goto with possibility to have it taken out. I would be curious to see what they have to say and would love to not have to deal with all this other stuff anymore!
 
Wirelessly posted (droid)

I hope that you find relief soon.
Is it possible that you have a neurological condition separate from the CI issue? Have you considered consulting a geneticist? You could have ataxia.
 
Shoshana said:
So I spoke to my Mom (who would be most supportive) and she told me I was the one who wanted the implant! Wow, I dont remember this...but then again I dont remember much and was struggling to fit in. Either way, She is coming back down to Florida and is going to help me look for another CI doctor to goto with possibility to have it taken out. I would be curious to see what they have to say and would love to not have to deal with all this other stuff anymore!
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Good! I hope that she will be very supportive of you.

People sometimes remember things the way they want to. It could be that your parents suggested the implant, and you just went along to please them and to fit it. It certainly wouldn't be the first time it has happened.;)

I had a student a few years back who requested a CI. When I asked him why he decided to get a CI (he was very strong in sign) he said so it would be easier for his mother to communicate with him. So yes, he asked for it, but not because he wanted it.
 
sallylou said:
Wirelessly posted (droid)

I hope that you find relief soon.
Is it possible that you have a neurological condition separate from the CI issue? Have you considered consulting a geneticist? You could have ataxia.
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I saw a nerologist who didnt do much for me after he was unable to get accurate test results due to the implant :/




DO they do any special testing before deciding to take it out?


Jillio--If all the doctors are friends they will keep quiet IF anything was wrong with the implant....
 
Shoshana said:
I saw a nerologist who didnt do much for me after he was unable to get accurate test results due to the implant :/




DO they do any special testing before deciding to take it out?


Jillio--If all the doctors are friends they will keep quiet IF anything was wrong with the implant....
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That is really hard to say. Of course it is a possibility. But there are still many ethical practitioners that put the patient's well being first and foremost. I'll keep my fingers crossed that you get one of those.
 
jillio said:
Good! I hope that she will be very supportive of you.

People sometimes remember things the way they want to. It could be that your parents suggested the implant, and you just went along to please them and to fit it. It certainly wouldn't be the first time it has happened.;)

I had a student a few years back who requested a CI. When I asked him why he decided to get a CI (he was very strong in sign) he said so it would be easier for his mother to communicate with him. So yes, he asked for it, but not because he wanted it.
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very possible! I was also picked on a lot by my peers and my sisters were not very nice to me about it...I remember the Dr. also telling us that "cant survive with such hearing loss". I am trying SO hard to remember the risk they warn you of before operation...I think Vertigo was one of them.
 
jillio said:
That is really hard to say. Of course it is a possibility. But there are still many ethical practitioners that put the patient's well being first and foremost. I'll keep my fingers crossed that you get one of those.
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Thanks :fingersx:

I really hope they can just FIX IT!
 
Shoshana said:
very possible! I was also picked on a lot by my peers and my sisters were not very nice to me about it...I remember the Dr. also telling us that "cant survive with such hearing loss". I am trying SO hard to remember the risk they warn you of before operation...I think Vertigo was one of them.
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How old were you when you were implanted, if you don't mind me asking?
 
Good luck with everything, Shoshana. We support you in whatever decision you make.
 
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