Author Topic: type of surgery/result  (Read 12398 times)

petittrv

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Re: type of surgery/result
« Reply #30 on: May 11, 2009, 07:32:52 am »
Alicia,

I had translab knowing there would be total hearing loss on that side and a good chance the facial nerve would be unrecoverable also.  I would go with whichever procedure gives you a chance (no matter how small) of it turning out the way you desire.  You can't go back afterwards so don't play the odds and accept something undesirable - go ahead and roll the dice on the option with the best possible outcome.  If you hit the jackpot - good for you, if not its probably the end result you would have had anyway.  Basically its your choice and although this is a very helpful forum and everyone is very supportive - you have to wake up and deal with the "new" you everyday, so give yourself the best chance at what you think will make you happy and then deal with whatever happens.  It helps having friends here who can help you through any residual issues but we all made our surgery decisions for our own reasons based on our own expectations.  You need to ask yourself what do you want (and "just make it go away" doesn't count) and what are you willing to risk to get it.  Explain to the doctors your desires and then let them restate your options.  If I could go back in time (ahh, the eternal quest) I would have tried to find a way to get the tumor cut down and then radiated like some other have had (mine was big) even if it meant waiting or travelling a long way to make it happen.  And I'm about 50/50 on whether I would have let them do the VII/XII transfer again (not one of your concerns).

I've read a few of your recent posts and you really seem hung up on the facial paralysis.  As others have said, there is life after AN removal.  I have total paralysis and the VII/XII nerve transfer just makes my face twitch every time I swallow (annoying as heck).  But you just deal with it and move on - its really not that bad.  My two oldest were about the same age as yours and they had no problems after the surgery - they were actually interested in the changes.  We don't even talk about it anymore.

Sorry for rambling - I hope you make the right choice for you.  But no matter the outcome you have plenty of friends here to help you through afterwards.

Rick
4.5 cm AN - diagnosed 12 Sep 07; removed 2 Oct 07.  VII to XII Nerve transfer 9 Oct 07; CSF leak repair/eyelid weight installed 16 Oct 07. Deaf in left ear, facial paralysis