Author Topic: Holy crap at the full range of mind games a AN brings.  (Read 14029 times)

Funnydream

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Holy crap at the full range of mind games a AN brings.
« on: August 22, 2010, 11:34:29 am »
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?"

Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

Jim Scott

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #1 on: August 22, 2010, 12:57:47 pm »
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
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #2 on: August 22, 2010, 09:42:57 pm »
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
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

HeadCase2

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #3 on: August 23, 2010, 07:20:58 am »
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
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

lori67

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #4 on: August 23, 2010, 07:25:32 am »
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
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Mickey

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #5 on: August 23, 2010, 08:45:21 am »
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

sunfish

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #6 on: August 23, 2010, 01:28:55 pm »
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.
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

moe

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #7 on: August 23, 2010, 01:36:44 pm »
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

06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Funnydream

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #8 on: August 23, 2010, 03:55:43 pm »
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. :)
« Last Edit: August 23, 2010, 03:58:43 pm by Funnydream »
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

Funnydream

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #9 on: August 23, 2010, 04:06:04 pm »
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.
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

moe

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #10 on: August 23, 2010, 11:50:43 pm »
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
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Sheryl

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #11 on: August 24, 2010, 10:46:29 am »
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
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

windy

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #12 on: August 24, 2010, 09:51:53 pm »
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!! 
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

pjb

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #13 on: August 25, 2010, 09:12:11 am »
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
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Nickittynic

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Re: Holy crap at the full range of mind games a AN brings.
« Reply #14 on: August 26, 2010, 03:26:25 am »
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!
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

 


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