ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Sue on April 16, 2010, 02:29:02 pm
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April 18 marks my four year anniversary of Gamma Knife radiation to kill the invading brain booger. I did send in my report to you all ;) that at the last MRI, all indications are that the stupid thing is dead, dead, dead.
So for my official Four Year Report, this is how it stands with me: At age 64 it's sometimes hard to differentiate between normal aging and AN interference, BUT, since balance nerve is unhappy there are lingering effects...
1. Minor balance issues. Nothing that I can't live with.
2. Minor Brain Fog/Cognitive/Memory issues. Haven't been sent to Memory Care Facility yet so that's a big plus!
3. The Tired Factor - Well, you all know how that goes - getting tired makes things a bit worse.
And since trigeminal nerve, poor thing, also was a casualty in the Attack of the AN:
1. I have facial numbness and my photo should be the Phantom of the Opera picture of the guy with the half mask. That's what I feel like sometimes.
2. That also involves the inside of the mouth, the tongue and the tingling edges that are most apparent around the mouth and the occasional salty taste, but thankfully not the heavy metal taste.
3. I'm also going to blame my drippy nose on this. And my nose will get very cold in the winter time, but I have a friend who also says he has that, and he has no AN, so maybe that's something else entirely.
4. I really hate this, by the way.
And since it's just the usual AN thing:
1. I've pretty much lost all my hearing on my AN side. Dr. Bader, the physician at Gamma Knife Center of Oregon, said, "You'll probably lose all of your hearing." I guess he was right. I'm going to assume that the tumor has cut off the oxygen to the nerve and probably pretty much killed it, but I think it put up a brave fight to the end. An audiologist that I went to explained that to me once.
2. The side effect we all hate: Tinnitus. Still have that, and once it was a slight hiss, as this was my first symptom that I was aware of, but now I would call it a medium loud hiss that can spike up a notch or two when agitated. For a while, when I took a shower, the tinnitus would disappear with the noise of the water. Now it doesn't. I used to use a fan in my bedroom at night, but changed to the Sound Machine I got at Bed, Bath and Beyond. I turn it to the rain setting and crank it up to medium high and that evens out the hiss coming from inside my head. But time does help. It's always there, but it can often recede into the background. But the Sounds of Silence would be a welcome relief now and then. sigh
3. I really hate this, too. If somebody told me I could get rid of just one symptom, it would be hard to choose. Normal feeling face or no constant head noise? Which one would you choose? Notice how hearing isn't even in the running? Weird, huh?
So big thumbs up for Modern Medicine and being able to kill off invading tumor. Kudos to my doctors and the caring people at the Gamma Knife Center of Oregon.
I still haven't forgiven my ENT for not diagnosing me sooner. Thumbs down to him.
And a special shout out to the awesome people on the ANA Discussion Forum and it's moderators for your continuing support, helpful advice, caring and yes, even love, I think. You've helped so many who have come here seeking answers. They were confused, desperate, scared people who found a safe haven in the storm. Thank you for helping me and for all the other people that you have thrown a life-line to. You all "rock" beyond words. :-* :-*
Respectfully submitted,
Sue in Vancouver USA
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Hi, Sue-in-Vancouver ~
Thanks for the comprehensive 4-year 'report'. It's pretty encouraging, for the most part, and it would seem as if your lingering symptoms are both typical and manageable. I'm certain many AN patients contemplating radiation or just past it will benefit from your self-analysis. Overall, a very positive assessment of where you are, 4 years out of radiation for your (now defunct) AN. Congratulations - and thanks for the kind words. Have a great 5th year!
Jim
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Thanks Jim. Yep, could be a lot worse. Too bad it's not better, but... roll with the punches life gives ya I guess.
Sue in Van.
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Congrats on your 4 year anniversary! Sounds like you are holding your own just fine ::)
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Hi Sue,
thanks for the detailed report. It seems that I am following your steps on many aspects (i.e. trigeminal nerve). Good thing that most of these symptoms are annoying but at least manageable, and you have a great attitude. I am also happy that you have a competent and caring medical team. By the way, do you know what is the criterion based on which the doctor says that the booger is dead? Is it from the absence of growth? darkening? or anything else? Just curious.
I wish you continued good reports in the future.
Marianna
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Marianna, good question. The first MRI after being nuked showed some dark spots. After that, the image of the AN looks pretty much the same each time. It hasn't grown and my doctor says it is "stable". I told him this last time I saw him that I wanted him to tell me that the AN was dead, and he said, "Oh, yes it it's dead." He said I could have another MRI in a year or if I wanted to put it off for two years that was okay with him. I am guessing then that after the next MRI, if all is still well and there are no surprises, I would be "released" from his care.
Sue in Vancouver
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Sue in Vancouver,
Just a hop skip and a jump from us Oregonians. Glad that your 4 year results are as good as they are though not perfect as we all would hope for. At least the tumor is not growing and causing more troubles, so you are in the successful counts. Yeah, this aging thing is hard to separate from the tumor woes, huh?
I am still watching a waiting, and had my 6th MRI/MRA last month and my three intruders remain stable, so I will continue my W and W journey. Wishing you all the best and hoping that you will grace us with your presence at our next meeting! You know we would love to meet you!!!
Blessings from Jackie
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Hi Sue - Since I am "going under the (Gamma) knife" in mid-May, and your now dead AN is around the same size as mine, I get great encouragement from your positive attitude. Thank you so very much for this post~
Nancy
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Thanks Guys!
Jackie, I am and shall always be an Oregonian. I may live here now, but I was born and bred in Oregon and lived there most of my life. No matter where I may live, I am an Oregonian!! ;) ;D ;D ;D
Sue in Vancouver
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Sue,
well, m'dear... what can I say besides WELL DONE (in EVERY sense! ;) )... .MAJOR congrats on the good news! Seems like yesterday we had our treatments done.. and look at us now! :)
Congratulations Sue! :)
xo
Phyl
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Thanks Phyl.! Yes, it doesn't seem that long ago sometimes, when all this started. Other times, seems I've been this way forever.
Mostly, I'm still "gobsmacked" that this has happened to me!! As we all are.
Sue in Vancouver, USA
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Mostly, I'm still "gobsmacked" that this has happened to me!! As we all are.
You've been talking to me bloke, haven't ya? :) Gobsmacked we are.... but, walking testiment that life can go on in an AN journey! :)
Onward and upward to Year 5! What a milestone that will be for both of us. Must start planning appropriate party now!
Congrats m'dear!
xo
Phyl
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Isn't gobsmacked a lovely word? Just kind of relays the right amount of emotional melodrama that we feel sometimes. Thunderstruck is another good one. Yeah, channeled a little Harry Potter with gobsmacked.
Party? Way cool.
Sue, still in Vancouver USA