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Sun Aug 05, 2007 3:07 am

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Location: Tampa, Florida

Hello everybody. This question is for all of you who wear a prosthesis over an implant. Is it common to need an implant replaced after a while? If so, about how often? Thanks so much for sharing any info you might have!



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Sun Aug 05, 2007 4:29 am

 
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One Eyed Leprachaun
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Hi Em's mum; I've had my implant and prosthethic eye for almost 8 years; I was told at the time of removal by my specialist that if the implant was rejected it would happen in 6-8 weeks; the impression I got was unless something drastic happened (like another accident or rejection) the implant is good forever. How is em? cheers from Dowunder; Vera

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Sun Aug 05, 2007 4:31 am

 
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One Eyed Leprachaun
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Hi Em's mum; had another thought after I posted; it could be different for Em because she is a child and will continue to grow; maybe ask specialist/occulist; cheers Vera

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Sun Aug 05, 2007 2:32 pm

 
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Thanks for replying, Vera. Emily is doing well. She had an exam on Friday and continues to be cancer-free.

The reason I posted the question here is b/c I don't think that the eye specialist is being completely honest with me. He likes to work exclusively with an ocularist who makes HUGE uncomfortable eyes and they look very fake. The doctor claims that if I use HIS ocularist, Emily will NEVER need to have her implant replaced. By the way, several parents have secretly given me business cards for other ocularists in this doctor's office b/c the children who use this ocularist have tons of eye infections, etc.

Anyway, I chose to use a different ocularist who makes beautiful eyes that are the right size and she never has infections and barely ever has discharge. We love him. BUT every time that we have another exam with the specialist, he says that if we don't switch to HIS ocularist (I wonder if he gets money for referring patients) Emily will need her implant replaced.

So, I guess the question is, does having a normal sized eye cause the implant to need replacement? My gut says NO and although I wish I could trust the doctor, I don't. I'm planning on switching to another doctor now that Em's cancer is gone who works with our ocularist that we like.

What do you think?



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Sun Aug 05, 2007 3:01 pm

 
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If you feel uncomfortable with your current specialists, it would be a good idea to get a second opinion.

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Sun Aug 05, 2007 3:37 pm

 
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Evil Genius
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There may be more to the story then he's telling you, but from what you'e told us my advice would be "Run Forrest, RUN" :) (Sorry was watching movies last night LOL)

I've never heard of a doctor telling you "You must use my guy or I will have do bad stuff to your child" He may have a valid reason, but he's not clearly telling you want it is, and even worse is that is making it sound like a threat.

No doctor should ever do something like that without a detailed explanation as to why, Next time you speak to him, ask him why you must use his guy or the implant would need replacement, if he says "That's the way it is" or something to that effect then leave the office right there and file a complaint with the AMA

If he gives you an explanation, get a second opinion. If the 2nd doc says that the first guy has a valid point then you can decide from there, but my gut (and a sizeable gut it is LOL :D) is telling me that the 2nd opinion will tell you the first guy is full of doo doo

Allthough, at the very least, I would find another specialist as it sounds like this guy is being less then honest with you, You have enough on your mind and shouldn't have to deal with a hinky doc as well. :(


Hope this helps



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Sun Aug 05, 2007 7:53 pm

 

I'm not a doctor but as a patient I can't see how the different prosthesis would affect the implant. In fact a badly fitting prosthesis is more likely to aggravate the conjunctiva covering the implant and cause problems. It all sounds a bit suspicious to me, as if the specialist has a financial interest.



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Sun Aug 05, 2007 11:47 pm

 
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Thanks for your advice, you guys. I'm glad you agree with me. When I've asked for specific reasons why she would possibly need her implant replaced, the doctor throws out some anatomical terms that I am not familiar with. I have asked him to speak to my ocularist to see if we could get a fit that he would like better, and his reply is that "it wouldn't do any good." Isn't that irresponsible?

We are with this specialist right now b/c he is supposed to be THE ONLY retinoblastoma specialist in the southeast U.S. And I give him credit for getting rid of Emily's cancer before it spread to her brain (of course he ended up removing her eye to save her). But just because he is an expert in getting rid of cancer doesn't mean he's an expert in prostheses and ocularists, I guess.

And I agree that a bigger prosthesis would cause MORE irritation than a well-fit one, right? That's what I was thinking, too.

The doctor whose patients go to our ocularist is not a retinoblastoma specialist, but he does treat children and he treats adult eye cancers. I'm hoping he'll agree to monitor Emily for us.

Thanks again for the support!



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Mon Aug 06, 2007 12:41 am

 
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Evil Genius
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It's great that he got the blastoma out, but that's no excuse for talking down to you like that (Using lots of anatomical terms and not making it an easy explanation is talking down in my book) as a doctor he has a responsibility to explain things to you clearly and to help you understand, not just say do it my way... The days when docs could do that ended in the 60's

I know this is easy to say and not easy to do, but have you considered taking her to a specialist outside the southeast area? I know that flights from Tampa to New York City are not that expensive and NY has some of the best specialists in the world. Also within a 3 hour car ride of NYC is the Willis Eye institute in Philidelphia PA (More specialists)

That way you can have her monitored by a blastoma specialist and hopefully find a nicer doctor :)

I remember when I was young, my parents took me all over the eastern seaboard going to specialists, but to be honest, 90% of them were here in NYC>..

Hope this helps



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Mon Aug 06, 2007 3:14 am

 
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One Eyed Leprachaun
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Hi I agree with all the posts; now that the cancer is gone trust the occulist and other eye people; I'm very lucky my specialist dealt with my cancer; and glaucoma; and other eye problems; removed it and sent me to a wonderful occulist; one wonderful guy and I trusted him with my life; Hope u find someone better for Em; How was the result in the Exam?? cheers Vera

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If there's no chocolate or chardy in heaven, I'm not going



Irish_in_Oz passed away on Februaruy 26, 2016.
She will be missed.
--
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Mon Aug 06, 2007 9:13 am


Em's mum
my daughter had retinablastoma too and lost her right eye, but two years down the line needed her implant removed and we did everything we were told to. I understand upto 20% of people reject implants - Laura had muitiple infections which weakened the conjunctiva covering her implant so it exposed.
We went for a derma fat graft instead of another synthetic implant and so far so good, so there is a good chance everything will work out for you and your doctor should support you and be completely honest with his reasons for you to use a specific ocularist
best wishes
Karen



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