Ci removal - Page 2

Shoshana · 08-11-2011, 12:34 PM

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!

jillio · 08-11-2011, 12:57 PM

Quote:

Originally Posted by Shoshana

how would they know this VS my body just rejecting it or something?

They can tell by the way the implant is in there and the scar tissue, etc. that they can see when they explant.

**sallylou** · 08-11-2011, 12:58 PM

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.

jillio · 08-11-2011, 01:00 PM

Quote:

Originally Posted by Shoshana

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!

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.

Shoshana · 08-11-2011, 01:03 PM

Quote:

Originally Posted by sallylou

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.

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....

jillio · 08-11-2011, 01:07 PM

Quote:

Originally Posted by Shoshana

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....

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.

Shoshana · 08-11-2011, 01:07 PM

Quote:

Originally Posted by jillio

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.

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.

Shoshana · 08-11-2011, 01:10 PM

Quote:

Originally Posted by jillio

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.

Thanks

I really hope they can just FIX IT!

jillio · 08-11-2011, 01:10 PM

Quote:

Originally Posted by Shoshana

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.

How old were you when you were implanted, if you don't mind me asking?

AlleyCat · 08-11-2011, 01:13 PM

Good luck with everything, Shoshana. We support you in whatever decision you make.

Shoshana · 08-11-2011, 01:22 PM

Quote:

Originally Posted by jillio

How old were you when you were implanted, if you don't mind me asking?

I was 14 (almost 15)

Shoshana · 08-11-2011, 01:23 PM

Quote:

Originally Posted by AlleyCat

Good luck with everything, Shoshana. We support you in whatever decision you make.

Thank You AlleyCat <3 It means a lot to know I have support and friends even know Ive only been here a short time! Its hard for other people (hearing) to understand all this stuff

jillio · 08-11-2011, 01:28 PM

Quote:

Originally Posted by Shoshana

I was 14 (almost 15)

I was thinking you were about that age. In that case, the possible side effects were probably explained more to your parents, because they are the ones that had to give consent for the surgery.

**sallylou** · 08-11-2011, 01:35 PM

Wirelessly posted (droid)

Sorry to hear that the neurologist was useless. That was my experience, too, even wihout the CI issue. I have ataxia (a/k/a falling over, running into things, and almost knocking myself out with a car door). It's very frustrating.
I hope that you get removal soon. Then, you can focus on dealing with these issues. Be kind and gentle with yourself. Hugs, if you'd like them.

**deafskeptic** · 08-11-2011, 01:39 PM

I wish you luck in getting explanted. I am surprised your mother is supportive of this.

Shoshana · 08-11-2011, 01:41 PM

Quote:

Originally Posted by jillio

I was thinking you were about that age. In that case, the possible side effects were probably explained more to your parents, because they are the ones that had to give consent for the surgery.

true, My dad was not really in the picture this time and I dont think my mom would remember this information.

Shoshana · 08-11-2011, 01:42 PM

Quote:

Originally Posted by sallylou

Wirelessly posted (droid)

Sorry to hear that the neurologist was useless. That was my experience, too, even wihout the CI issue. I have ataxia (a/k/a falling over, running into things, and almost knocking myself out with a car door). It's very frustrating.
I hope that you get removal soon. Then, you can focus on dealing with these issues. Be kind and gentle with yourself. Hugs, if you'd like them.

Thank you! I need to look into another CI dr. and see what they say if they will and if they think will help me

**GrendelQ** · 08-11-2011, 01:54 PM

Quote:

Originally Posted by Shoshana

true, My dad was not really in the picture this time and I dont think my mom would remember this information.

My daughter's CI surgery was 4 years ago, and I remember pretty much every word of the hospital side effects/risks/permissions. Although I can say the same for the documentation we have for when she had to get several fillings drilled in those little baby teeth last year, and I agonize a bit over any medication I provide because those risks are daunting. But that's what parents do. But when you have surgery, it's not just your everyday small print or otherwise inconsequential information when it comes to your children, and for most parents of deaf kids with CIs I know, that decision was pretty momentous. I suspect your mom remembers that decision pretty well. PM'd you, Shoshana

Sending good thoughts.

InfamousMacBook · 08-11-2011, 02:16 PM

I hope you come out on top and get this resolved. I will keep you in my prayers.

**sallylou** · 08-11-2011, 02:19 PM

Wirelessly posted (droid)

It doesn't matter what the forms said if one can prove negligence. Collection is a different issue.
The easiest cause of action is based the manufacturer's failure to warn. No collection problems either.

cdmeggers · 08-11-2011, 03:54 PM

I hope you are able to find a CI surgeon that will work with you on figuring out what is causing your problems and is willing to remove the implant. If one is not doing well with the implant, and is having problems after implantation, then it's not worth it to keep the implant if it's just causing problems.

**Jiro** · 08-11-2011, 04:10 PM

Quote:

Originally Posted by Shoshana

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!

student of your doctor? oh my goodness....

well - you'll need to see another doctor who is NOT associated with your current doctor in any matter so that there's no conflict of interest. Do not see any another doctors that's referred by your doctor. By any chance, if you see a doctor and he's asking you who your surgeon was for implanting your CI... do not mention a name. You are not required to answer that question.

Quote:

Originally Posted by Shoshana

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!

perfect. I hope your mom is able to find a reputable CI doctor who is not associated with your current doctor but it might be very hard to find somebody like that since it's a "small medical community" in same state. I'm pretty sure there is a handful of surgeons who implant CI know each other in Florida. But I'll hope for a doctor who will be very attentive to your case only and nobody else.

Shoshana · 08-11-2011, 05:38 PM

Quote:

Originally Posted by Jiro

student of your doctor? oh my goodness....

well - you'll need to see another doctor who is NOT associated with your current doctor in any matter so that there's no conflict of interest. Do not see any another doctors that's referred by your doctor. By any chance, if you see a doctor and he's asking you who your surgeon was for implanting your CI... do not mention a name. You are not required to answer that question.

perfect. I hope your mom is able to find a reputable CI doctor who is not associated with your current doctor but it might be very hard to find somebody like that since it's a "small medical community" in same state. I'm pretty sure there is a handful of surgeons who implant CI know each other in Florida. But I'll hope for a doctor who will be very attentive to your case only and nobody else.

yea, it might be hard because my surgeon is/was "world renowned" and "
Dr. ******* is considered by fellow physicians to be one of the most skilled in his field and most qualified for reviewing complex medical conditions." (I pulled that from his information faculty profile). Maybe it would be best not to tell another dr. who implanted me...but is there any reason they MUST know?

jillio · 08-11-2011, 05:46 PM

Quote:

Originally Posted by Shoshana

Thank you! I need to look into another CI dr. and see what they say if they will and if they think will help me

If that one doesn't help you, keep looking until you find one that will. Sometimes it takes weeding through several before you get the doctor you need.

jillio · 08-11-2011, 05:48 PM

Quote:

Originally Posted by Shoshana

yea, it might be hard because my surgeon is/was "world renowned" and "
Dr. ******* is considered by fellow physicians to be one of the most skilled in his field and most qualified for reviewing complex medical conditions." (I pulled that from his information faculty profile). Maybe it would be best not to tell another dr. who implanted me...but is there any reason they MUST know?

They will probably want to review your medical records that have anything to do with your implantation. That is for your well being, though.

Keep in mind, too, that just because his faculty profile says it doesn't mean it is 100% true. Those profiles are designed to reflect positively on both the individual and the institution.

Shoshana · 08-11-2011, 05:54 PM

Quote:

Originally Posted by jillio

They will probably want to review your medical records that have anything to do with your implantation. That is for your well being, though.

Keep in mind, too, that just because his faculty profile says it doesn't mean it is 100% true. Those profiles are designed to reflect positively on both the individual and the institution.

True, but I have NEVER heard or read one bad or negative thing about him...

jillio · 08-11-2011, 05:59 PM

Quote:

Originally Posted by Shoshana

True, but I have NEVER heard or read one bad or negative thing about him...

But you aren't privy to the conversations that go on in the doctor's lounge.

Not saying that there is anything negative being said about him, but what colleagues think of one is more honestly expressed to another colleague.

**Smithtr** · 08-11-2011, 06:14 PM

I already remove my implant CI I am lucky whoot safe I think so 2 year ago !I was headache often ad member knew me!

**Smithtr** · 08-11-2011, 06:15 PM

I know experience lots really strong seems fight to doctor because I am tough that is not easy I can help you we are resolve support!

OP!

Shoshana · 08-11-2011, 06:18 PM

Quote:

Originally Posted by smithtr

I know experience lots really strong seems fight to doctor because I am tough that is not easy I can help you we are resolve support!

OP!

THANK YOU!! Did you have more symptoms than headache? I think its more common to have it taken out than people think, no?

08-11-2011, 12:34 PM	#31 (permalink)
Shoshana Registered User Join Date: Jun 2011 Location: West Palm Beach, FLORIDA Posts: 397	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! Beach girl likes this. __________________ SHOSHANA

08-11-2011, 12:58 PM	#33 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	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. jillio likes this. __________________

08-11-2011, 01:13 PM	#40 (permalink)
AlleyCat Registered User Join Date: Jun 2005 Location: In my time zone Posts: 10,819	Good luck with everything, Shoshana. We support you in whatever decision you make. jillio, KristinaB and Shoshana like this.

08-11-2011, 01:35 PM	#44 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	Wirelessly posted (droid) Sorry to hear that the neurologist was useless. That was my experience, too, even wihout the CI issue. I have ataxia (a/k/a falling over, running into things, and almost knocking myself out with a car door). It's very frustrating. I hope that you get removal soon. Then, you can focus on dealing with these issues. Be kind and gentle with yourself. Hugs, if you'd like them. jillio likes this. __________________

08-11-2011, 01:39 PM	#45 (permalink)
deafskeptic Premium Member Join Date: Sep 2006 Posts: 14,512	I wish you luck in getting explanted. I am surprised your mother is supportive of this. __________________ Left ear implanted with Med-El on April 24 2007. Activated on May 9th. Upgraded to Opus 2 9/10/2010 Think Pink. FREE JILLIO!

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Deafness	Sponsored Links __________________ This advertising will not be shown in this way to registered members. Register your free account today and become a member on AllDeaf.com

08-11-2011, 02:16 PM	#49 (permalink)
InfamousMacBook Registered User Join Date: May 2011 Location: San Antonio, Texas Posts: 217	I hope you come out on top and get this resolved. I will keep you in my prayers.

08-11-2011, 02:19 PM	#50 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	Wirelessly posted (droid) It doesn't matter what the forms said if one can prove negligence. Collection is a different issue. The easiest cause of action is based the manufacturer's failure to warn. No collection problems either. jillio likes this. __________________ Last edited by sallylou; 08-11-2011 at 02:51 PM.

08-11-2011, 03:54 PM	#51 (permalink)
cdmeggers Registered User Join Date: May 2005 Location: Wyoming Posts: 2,212	I hope you are able to find a CI surgeon that will work with you on figuring out what is causing your problems and is willing to remove the implant. If one is not doing well with the implant, and is having problems after implantation, then it's not worth it to keep the implant if it's just causing problems. jillio likes this. __________________ My Ear Blog Advanced Bionics BEA Volunteer Mentor

08-11-2011, 06:14 PM	#58 (permalink)
Smithtr Siberian Husky Join Date: Jun 2006 Location: Canada Posts: 14,680	I already remove my implant CI I am lucky whoot safe I think so 2 year ago !I was headache often ad member knew me! jillio likes this. __________________

08-11-2011, 06:15 PM	#59 (permalink)
Smithtr Siberian Husky Join Date: Jun 2006 Location: Canada Posts: 14,680	I know experience lots really strong seems fight to doctor because I am tough that is not easy I can help you we are resolve support! OP! __________________

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