ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Funnydream on August 22, 2010, 11:34:29 am
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Not only do I have to deal with the AN surgery.
But every little thing to do with a AN I start thinking about.
Like I'm totaly looking in the mirror at my eye all the time. Everytime I feel something to do with my head. I tell myself "Dude, is it the AN?"
I'm seeing things out of the corner of me eyes all the time too. And I'm thinking "Dude, Is it the AN messing with me?"
When I swallow a pill and it gets stuck alittle. I'm thinking "Was it or was it not the AN?"
Sometimes when I stand up fast or look up for a long time I start hearing things as though some one was putting cups over my ears and taken em off over and over. Like a slow motion helicopter blades. "Is it the AN?" "Am I going to die?" "Should I get my cell phone out and get really to call 911 if I fall over?"
I'm seeing atifacts with both eyes the same way. So I know its in my brain. "Dude, Is the AN messing up my brain?" "Noooooooooo.......Leave my brain alone"
Then there is like the rest of my life to think about. "Dude, Will all this stress kill me later in life?"
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Then there is like the rest of my life to think about. "Dude, Will all this stress kill me later in life?"
The stress will kill you - but only if you let it. You need to take control of your thoughts and not allow a fear of the unknown to dominate you.
Although your angst is relatively normal, Like most AN patients, once you're through the surgery and recovered, I'm sure you'll lose a lot of these fears and worries.
Jim
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Funny -
Jim is definitely right; you need to take control of your thoughts and not allow your fears to get the best of you.
You might find it helpful to seek some kind of therapy or counseling to help you deal with it.
Just a thought,
Jan
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FD,
It's completely normal to attribute all manner of "symptoms" to AN, once you've had an AN diagnosis. I think we all now pick up on things that we previously would have ignored, and think "Is that from the AN". It's part of the uncertaintly of dealing with AN. :) With time, you'll think about it less and less.
Regards,
Rob
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And if you just happen to fall over for no apparent reason, you should probably call 911 if you have an AN or not. ;)
Lori
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As a AN Wait + Watcher for 3+ years now I`ve had to make some real adjustments to life know whats goin on inside my head. Actually I`ve had symptoms for 30 years when my tinnitus kicked in permenant. From the beginning I took this as a challenge and by researching talking with fellow AN`ers coming up with a positive course of action. As we all know there are many ways to handle this problem and for the most part any one can come up working well for you. With that said its up to each one of us individually to pick whatever the need to do, stay focused and positive, doing whats necessary to make your life as best as it can be. Everything goin to be Alright! Best wishes, Mickey P.S. +The nicest people here to talk with
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First of all, if it IS the AN, you probably won't die.
Wow! I can relate so much to your post. I couldn't for the life of me figure out what was wrong with my vision. Figured it was the AN. Don't know for sure yet, but now I'm CERTAIN its the AN. I think I've had just about all the symptoms you mentioned.
One thing that has helped me this month - I've come to peace with the AN. This is my new life. I will just keep doing my usual activities (with reason - I'm staying off my racing bike), and if I fall over, well, I'm in pretty good health - pretty good chance I'll just get up, dust myself off, and keep on trucking (as they used to say in "the day"). That's my plan, at any rate.
Once I quit panicking and getting anxious about maybe falling over at work, etc. I became much more confident. And you know what . . . I haven't fallen over yet (at work!).
I've thought about going to counseling to talk with someone about this. My family is fairly supportive, and I have you guys, but no one really understands what it's like to live like this except someone else who has it.
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Totally normal thoughts, but weed out most of those thoughts as being due to the AN!
I too was more aware of my symptoms after I found out about the AN. Probably more aware of the balance/dizziness/tinnitus. But I proceeded as usual. Keep busy/focused/active in what you do, while you are figuring this out.
Certainly post any symptoms but as far as your symptoms:
I'm seeing things out of the corner of me eyes all the time too. And I'm thinking "Dude, Is it the AN messing with me?"
NO!
When I swallow a pill and it gets stuck alittle. I'm thinking "Was it or was it not the AN?"------DEFINITELY NO!!
Sometimes when I stand up fast or look up for a long time I start hearing things as though some one was putting cups over my ears and taken em off over and over. Like a slow motion helicopter blades. "Is it the AN?------COULD BE"
"Am I going to die?" --------NO!
"Should I get my cell phone out and get really to call 911 if I fall over?"-----You're NOT going to fall over!
"Dude, Will all this stress kill me later in life?"------------NO! Like Jim said, only if you let it.
So breathe, relax, I know it is nerve wracking.
Slow growing benign tumor, remember that, and excellent surgeon who will take GOOD care of you.
Do you have a surgery date??????
Keep on doing your thing, and do positive fun things if possible. :)
Maureen
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When I swallow a pill and it gets stuck alittle. I'm thinking "Was it or was it not the AN?"------DEFINITELY NO!! [Doctor said my swollowing would be affected. But personaly I don't notice anything at all.]
Sometimes when I stand up fast or look up for a long time I start hearing things as though some one was putting cups over my ears and taken em off over and over. Like a slow motion helicopter blades. "Is it the AN?------COULD BE" [This does suck. Run up and answer the door and can't understand anything because I stood up real fast.]
"Am I going to die?" --------NO! [this part makes me feel better. haha]
"Should I get my cell phone out and get really to call 911 if I fall over?"-----You're NOT going to fall over! [I hope your right]
"Dude, Will all this stress kill me later in life?"------------NO! Like Jim said, only if you let it.
So breathe, relax, I know it is nerve wracking.
Slow growing benign tumor, remember that, and excellent surgeon who will take GOOD care of you. [I have a fast one. Oct 2003 MRI is clean.]
Do you have a surgery date?????? [Just got it about 5 min ago. Sept 17]
Keep on doing your thing, and do positive fun things if possible. :) [Okay:)]
Maureen
I put all my answers and babbling in brackets. :)
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Wow! I can relate so much to your post. I couldn't for the life of me figure out what was wrong with my vision. Figured it was the AN. Don't know for sure yet, but now I'm CERTAIN its the AN. I think I've had just about all the symptoms you mentioned.
For me. Its like when you get a hair in your eye and you can see it floating on top of everything your looking at. But allot worst. And it comes and goes. So very happy when it goes. I close one eye and see it. Then try the other eye and I see the exact same _curse word_ thing. And my vision seams to blurr some.
I totally at first thought it was a big hair in my eye. But its not.
Also it looks more kaleidoscopesh than a hair in my eye. If that's a word?
I really find that to be the most disturbing part of my AN. By far.
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Funnydream,
Clever way of responding to my post :D
So Sept 17 is the day, I'll remember that cuz it's my husband's birthday.
Where is your surgery?
I had no idea an AN can cause those kind of symptoms of the vision and such. Hang in there.
Maureen
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Hi Funny - was scrolling through and just happened to click on this subject and the posts. I have been a wait and watcher for almost 9 years - 9th cranial nerve rather than 8th (acoustic) but seem to have some of the same symptoms.
Just wanted to mention with the eye problems that I have developed "floaters" that are in no way connected to my brain tumor. I used to think that floaters were little black specks but mine came up suddenly as spider webs and long stringy things floating around obscurring my vision. I immediately got in to see an ophthalmologist (M.D.) and found out that floaters can be many shapes and quite aggravating. Best to try and not focus on them. Dry eye is a problem too causing blurriness and an over-the-counter eyedrop called Systane has helped tremendously. Hate to throw another doc into your mix but maybe a thorough eye exam is warranted.
Hang in there and keep us posted,
Sheryl
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I know you probably were not trying to be funny, but your post is kinda funny and totally relatable! I think we have all been there at some point through our AN journey. But, as Jim put it so well, you can not let it control you. I think it is somewhat of a process over time and it does get better, especially after treatment. However, if there are setbacks in your AN journey, you may experience some of the same thoughts, but probably not to the degree you are experiencing now. Trust me, I think I am there right now. I am working on myself, even as I type.
I wish you positive thoughts, less stress, and a successful surgery ahead. Take care!!
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We have all been there one way or another the shock of diagnosis is mind blowing but we have to remember it is benign and slow growing and it is definitely stressful waiting to have the surgery... But the main thing is you cannot let the stress get the best of you, I know it is hard but you have to try and find something to keep you busy ...... You have to take control over the AN the AN is not going to control you !
My prayers and thoughts will be with you,
Pat
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Sorry you're having so much stress! It *is* hard not to think about, isn't it?
I'm interested that you have the weird 'helicopter blade' hearing. I had that, too, and had such a hard time describing it to the docs!
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I went to the opthalmologist with stuff that looked like floaters and seeing things out of the corner of my eye, and the doc said it's all neurological. I now think it's probably eye movement problems similar to nystagmus, related to the vestibular system. After all, the tumor is choking the "heck" out of that nerve.
The cranial nerve that affects swallowing can be affected by the AN and/or treatment. Don't know how common this is, but I sure know I've had more swallowing problems since CK.
It seems many docs know less about these kind of symptoms. Which is why (in retrospect) you should have your treatment done by someone with lots and lots of experience treating AN patients. I had CK done by docs who had lots of experience with brain tumors of all sorts and CK, but little experience with ANs. I think they did a fine job zapping the sucker, but have really muddled around trying to help me with the after-effects.
Funnydream, I've had just about every thought you mentioned in your post, and just about every symptom. Was wondering last night if the low level stress of this whole experience will just gradually wear me down.
My goal over the next few days is to pray lots, and try to get a new game plan for my life. In the short run, if the symptoms continue (especially balance/wonky head), just things I can tweak to make it easier on myself. In the long run, if the symptoms continue, how I'm going to deal with this. I think staying positive, keeping life simple, remembering the spiritual, and taking good care of one's health is a good plan.
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FunnyDream....
Sounds like your in need of a shot of tequila and a cold beer! We all stress out over these AN's...but you can't let it get to you. It is absolutely easy to relate everything and anything to the AN....every eye twitch, headache, blurred vision (probably from the tequila ;) etc....
Try to not concentrate on it....if its the AN, you'll know it.
Take care
GM
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A shot of tequila and a cold beer!
Now why didn't I think of that.
VERY good advice, GM ;D
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LOVE your advice, GM!
You absolutely can't let this AN control your life - if you do, you will end up in a ball in the corner!! :D Do you have crazy fears about flying or driving because a LOT worse things can happen from that... ???
K ;D
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Love the title--"Holy crap...." Pretty much paints an accurate picture of thoughts that have run through my mind, at one time or another, with AN! In all honesty, I have had my freak out moments but really, after awhile, it settles down and I now can see that life goes on, with a few differences and I'm fine. What helps me a lot is motion (sounds weird) but if I stay active physically, I don't focus on the AN and it helps me to sleep more soundly at night, so I don't lie in bed and think about things too much. And praying helps too. :) ~michelle d.~
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You'll know when you have a real problem with swallowing caused by the AN or post-surgical nerve trauma. It won't be just once in awhile. I think fewer than 20% of patients suffer from this problem...I'm one of the lucky ones. ;-)
It's not fun, but like all this other stuff it is survivable and hopefully temporary.
Hang in there. My sister and I went through this after Mom died from ALS. Every time something went wrong, especially with swallowing, is this ALS?
Turns out, I had a tumor. Beats the hell out of ALS. (IMHO)
-Tod
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I have began to go in other direction ...kinda refuse to acknowledge anything is AN related (even if it is ) because I am surrounded by people who have decided that everything wrong with me is AN related when that is not always the case ... no easy answers ... and sometimes no answers at all ... will keep prayer rock in hand on the 17th ...
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I get the movements out of the side of my eyes too! Also the floater stuff that I guess is normal with age. The combo of the floaters, the
wonkiness, the tinnitus and those "side of the eye" movements, all combined, make riding in a fast car almost unbelievable. If they could put that feeling
in a video game, it would probably sell like hotcakes. Riding in a car at high speed at night is impossible. I shut my eyes and try to stay calm even though my
brain is saying "Slam on the brakes", "jump out of the car", PANIC!!
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I just got the floater thing about a month ago...i have what looks like a mosquito in my right eye...that along w/ the tinnitus,no night vision wonky head and pain in the neck....oh but nne of this is AN related. ;D
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I just got the floater thing about a month ago...i have what looks like a mosquito in my right eye...that along w/ the tinnitus,no night vision wonky head and pain in the neck....oh but nne of this is AN related. ;D
Saw my ENT last week. Gave him a hard time about the pain in my neck and the Helicopter blade sounds that are getting worst.
My ENT said the neck pain is from the fact that my balance is out of whack and that my muscles normally compensate for gravity. Since they think Gravity is not were it suppost to be they are contracting the wrong way all the time. Even while sleeping. Kinda weird if you ask me.
The Helicopter blade sounds I get are from the veins in my neck going to my brain being squished. And that's why it kicks in more when I look up for too long.
He said he wasn't sure on the floaters. But he assumed (yes that word) that my visual nerve is being squished. Not sure what to think of that.
My ENT is :
Ricardo Cristobal, MD, PhD
Otology, Neurotology and Skull Base Surgery
I googled up incomes of these doctors. I was very shocked to find that a ENT makes allot more than a BRAIN Surgeon.
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Funnydream: It looks like you just recently had your surgery.....it's easy to say but it's true ::)"this in time will get better". I can remember all these type of anxious thoughts, still get them from time to time, they get easier to put from the mind the longer you go from DX/TX.
I am someone who gradually got better with all of this and then found a regrowth, I could live with THAT going on though (guess we all have our limits) and after a few years of watching got it removed purely due to my "MIND" (physically it didn't need to come out). Other than the anxiety period I had knowing it had regrown I have been pretty good with limiting my worry. Try to limit you worry time. For example set aside a certain time each day when you will think about it, worry, research, go on on this site and then when the time is up force yourself to do something else that requires your concentration and or of a physical nature. If the worries come to mind when "it's not time" don't let yourself entertain them, find something else to occupy your mind until it's "worry time again" . With practice this likely will become second nature/habit and maybe with time the worry time will no longer need to be.
Kathleen
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Oh yes!! I know what you mean. Everytime something happens, I feel like it's the AN. I'm so afraid I'm going to die from it. I get noises in my left ear and there's supposed to be no hearing left. Lately I've been hearing a helicopter noise in my right hear (mostly in the mornings right when I wake up). I am so afraid that I'm going to lose hearing in my right ear because that's the only ear I have left. I had surgery in February and radiation in August. I can remember how scared I was at this time last year. I can't beleive it's going to be a year already.