ANA Discussion Forum
General Category => AN Issues => Topic started by: MAlegant on September 20, 2008, 07:16:25 am
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This is a question I never asked and one that I've been worried about. I know the odds of the tumor growing back but other than that, do I run a continued risk of stroke and other complications? I will ask the doctor on Oct. 7, but wonder what you all have been told. I'm not afraid, I just want to know.
Thanks,
Marci
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Marci,
I never heard of a correlation nor has any doctor said that to me and I have asked about long term outcomes. My friend's mother-in-law had an acoustic removed over 25 years ago (Jan btw from the Chicago Ear group) and is fine and enjoying life in her upper seventies.
My best hope is that you'll find out there is a better prognosis of the American Express company calling your husband to verify out of town shopping charges <grins related to ANA in Chicago post>
Kate
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:D :D :D :D :D :D :D :D :D :D
Thanks Kate
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I was told that this doesn't lower my life expectancy at all.
So, we will all be able to grow old (and not gray, since we've already determined most of us take care of that part) together. ;D
Maybe we can all move into the same nursing home! A bunch of old, wobbly, deaf people. Now that sounds like fun!
Lori
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Marci:
Interesting question and yet one I never thought to ask my doctor.
I would assume that if one is in relatively good health before and after surgery/radiation, there should be no significant effect on one's longevity. You have a benign tumor, it's surgically removed and/or radiated and you heal. Once the healing process is complete (not counting longer-term side effects such as facial paralysis) your body should function normally for the foreseeable future.
I'm not a doctor and maybe I'm being somewhat naive but I don't expect my AN experience to affect my lifespan, which I assume will be somewhere in the nineties. :) Hey, I'm just being optimistic. My dad lived until age 92.
Jim
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Marci -
although I'm no doctor, beyond the 1-2% chance of regrowth, I think your long-term prognosis is excellent.
Lori -
can I get the room next to yours at the nursing home? I'm going to need lots of laughs in my old age ;D
Good crack about American Express, Kate :D Lori, K, and I might have to add you to our comedy routine ;)
Jan
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Jan,
You, Kate, Lori and Kay need to keep the humor flowing. Someday I'm going to compile it all and write a book called The Humor of an Acoustic Neuroma.
Marci, in everything I've read, I never saw it mentioned that the recurrence of a tumor is probable or even a good chance. I have noticed a few people on the Forum -- in their signature lines -- who have had various surgeries related to the AN surgery itself -- but I don't recall anyone who had a regrowth.
Interesting question though.
David
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Marci~
I alsways said that I would be playing golf in the Bahamas when I was 80 - I don't plan on slowing down any... ;)
K
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Uh, David? If you do write the book, can we expect royalties?
I don't know how to play golf, but I'd like to retire in the Bahamas :D
Jan
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Jan~
I don't even know if there IS a golf course there...if not, I'll just hit a few balls into the ocean! ;D I'll sit on the sand & drink umbrella drinks with you!! ;)
K
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I'm not a golfer either, but I am good at sitting in the sand and drinking umbrella drinks.
Marci, you can plan on retiring to the Bahamas with us. ;D
And Kay, you can't hit golf balls into the ocean - don't you watch Seinfeld???
Lori
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That sounds really, really good. Do we have to wait until retirement?
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I'm in ANYTIME...the sooner the better!! ;D
K
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Hi Marci,
I have a bit of tumour on my facial nerve and there is a chance it could grow. IF it does grow I am relieved to know that it will not kill me - I am being monitored for the rest of my life. It will never get to the life threatening size it was before. My only fear/concern is how will the treatment, that I choose, affect me. I have facial paralysis and that pretty much freaked me out (I did not expect it at all). Although I am getting a tiny bit of movement, once it returns I won't want to loose it again. Scary but it is my life. I have always said I would never grow old gracefully that I would fight it tooth and nail now I have a new battle and will appreciate having the opportunity to grow old. Funny how you can change your perspective. We have a life to live Marci now we have this second chance. I am mushy today.
Hugs to all of you - thanks again for letting me ramble and being there for me.
Michelle ;D
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Hi Michelle,
Since surgery I have felt mushy just about every day. Each one feels like a gift, even the bad days. I hope that stays with me forever.
I'm glad you're getting movement and I know how hard it is to wait, but you are doing an amazing job. My numbness continues and it's difficult to say if it's improving. It's such a SLOW process.
Marci (never been slow)
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Thanks for the kind words Marci. Before I had my surgery 80% of my face was numb. I was told that there would be a chance that it would not return. I have gotten back about 75% back (beside my nose it is still numb). Anyway the reason for my rambling is that when the feeling started coming back I felt a rushing feeling from just in front of my ear to an area that was numb (at the time it was my lip). It is happening again, I really need to concentrate, it is a tiny tingling/rushing feeling kind of like a hair brushing across my face.
I am taking 369, B complex and a multi vitamin, I have massage every two weeks and try hard to walk everyday. My neurosurgeon wants me to do lots of heart pounding exercise (I guess getting the blood moving is crucial). Teaching kindergarten is a workout in itself.
Don't give up...it still can happen.
I have this stuck on my firdge: Never, never, never give up. ~Winston Churchill....and this... You have within you, right now, everything you need to achieve almost any goal you can set for yourself. The only question is how badly you want it, and how hard are you willing to work fo get it. There are not limits.
Michelle ;D
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Michelle~
I love that 2nd quote - I hadn't heard it before!
I bet you are tired when you get home at the end of the day!! ;D
K
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ok, my 2 cents (or less than that)..... AN's being benign..... not thinking it should affect my long term prognosis unless (as others noted) the small % of regrowth potential and if that were to happen... and not caught early that one would become life threatening (as rare as that is) but I try not to think in those terms (although always in the back of my mind but I don't dwell on it). My long term prognosis for life expectancy is definately shortened if the bloke ever found out how much I recently paid for "bling" that I'm wearing on my fingers.... so, me likes my odds of the AN prognosis better! :)
Phyl
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Phyl,
I think it's a fact that "bling" can actually increase your lifespan!! Or at least it can make you happy while you're here!! Think your bloke would notice if I charged some bling of my own to his credit card? I know mine would.
Lori
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The way it was told to me was that I will have it for the rest of my life. Weather I am 50 or 90. Many people live very long lives with this. There are even some who have it and don't even know it and live very long lives. Try not to dwell on that as it can tend to consume you. Good luck on Oct 7 You will be in my thoughts.
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Hi Marci,
Thought I'd chime in. It's my understanding that most AN patients will live normal (even if it's a new slightly altered normal) healthy lives. Also, most will recover most of not all of their normal function. Unfortunately, as we all know not everyone recovers completely from facial palsy and some have lifetime balance problems to some degree, but for those of us who stay active here, I think we have a better chance of adjusting to our new normals thanks to the support of our fellow ANers.
Wishing you the best,
Wendy