Author Topic: Fatigue?  (Read 13457 times)

b28

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Fatigue?
« on: November 21, 2011, 12:23:34 pm »
Did anyone experience fatigue before diagnosis? (Hard getting up and staying up in morninings, long naps, lack of energy,etc..)

Lori101

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Re: Fatigue?
« Reply #1 on: November 21, 2011, 01:13:09 pm »
Yes, I was only diagnosed in October but have been very fatigued since the beginning of the year.  It was particularly bad over the summer - seemed as if every time I sat down, I'd just fall asleep.  No matter how much sleep I got, it was never enough.
2.9 cm x 2.5 cm x 2.7 cm left side AN - MRI Oct 6/11
Retro-sigmoid Apr 24/12 - Dr. Akagami at Vancouver General Hospital. Vancouver, BC
Released after 3 days
SSD Left, very slight delayed onset facial weakness, resolved except eye issues
Working on balance issues

Jim Scott

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Re: Fatigue?
« Reply #2 on: November 21, 2011, 03:59:31 pm »
b28 ~

Yes.  I experienced growing fatigue in the months prior to my AN diagnosis.  That was a factor in my decision to seek medical advice.  By that time, the MRI results indicated that the (previously unknown) AN had grown to 4.5 cm and was pressing hard on my brain stem.  Surgery was imperative at that point.  Fortunately, the debulking and radiation protocol I went through were successful and produced very few complications.  That was 5 years ago.  I'm doing fine, today.

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.

sunfish

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Re: Fatigue?
« Reply #3 on: November 23, 2011, 11:36:24 am »
I've had a few problems with AN-related fatigue.  I think it takes so much extra energy for the brain to keep my balance, and hear what's going on around me.  I have my good days and bad days.
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

BlueSky

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Re: Fatigue?
« Reply #4 on: May 22, 2012, 06:09:04 pm »
I was wondering if people who have AN have problems with fatigue as well. I'm newly diagnosed but have been having fatigue issues for a couple of years now. I've felt pretty drained lately. 

lrobie

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Re: Fatigue?
« Reply #5 on: May 23, 2012, 10:18:38 am »
I can't say for sure whether my fatigue is from the AN, my thyroid or just something else.  I feel like it has gotten worse, though, in the past couple of years.  I question whether it's the stress that your body is going through with it always on your mind, doing research, etc.  I drive to work in the morning feeling like I could already take a nap.   ???

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

ncbj

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Re: Fatigue?
« Reply #6 on: May 23, 2012, 01:41:37 pm »
I had fatigue a couple of months before diagnosis. It seems to be a pattern related to - at least some - AN's.

PaulW

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Re: Fatigue?
« Reply #7 on: May 23, 2012, 03:09:24 pm »
I was fatigued for about 2 years before diagnosis, I thought I was getting old.
Went to the doctor, had lots of tests, found nothing.
18 months after CK my energy levels have improved immensly.
I put this down to the decline and changes of my balance nerve.
As my balance improved so has my fatigue.

Lots of people with AN's complain about fatigue or general lack of energy.
It happens pre and post treatment, radiation or surgery.

Most doctors seem a little puzzled by the fatigue as neither the surgery or the radiation fully explain the fatigue in many cases.
I would certainly welcome more research into fatigue and vestibular problems with AN's.

I feel there is room for improvement in how this is managed.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

lrobie

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Re: Fatigue?
« Reply #8 on: May 24, 2012, 10:07:59 am »
I agree.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

rupert

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Re: Fatigue?
« Reply #9 on: May 24, 2012, 04:01:20 pm »
Lisa, I sent you a note on brain tumor's and fatigue.   I don't have the link anymore to post, just the PDF file.
Basically,  because the tumor is impacting functions of the brain like balance, vision, hearing etc.  Your brain has to work much harder than normal to try and compensate.  As your brain works harder to overcome issues,  it makes you tired.  Your brain telling you it has been overworked and needs a rest. Just like physical activity.  I have found I need much more rest now than I have in the past.   AN's,   the gift that keeps on giving.

luvzmutt

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Re: Fatigue?
« Reply #10 on: May 25, 2012, 09:10:03 am »
Rupert,

Could you forward the pdf file to me as well.

Thank you!
~Leslie
Right side AN diagnosed 7/10 - 6.1 mm x 7.8 mm
1st follow-up MRI 1/10/11 - 0.9 x 0.3 x 0.4 cm
2nd follow-up MRI 7/11/11 - 1.0 x 0.7 x 0.6 cm
Follow-Up 12/20/11 - no noticeable change
MRI 11/26/12 - .5x1.0x.6 cm
MRI 10//21/13 - 0.8 x 1.0 x 0.7
Some hearing loss AN side and tinnitus
NF1 & optic glioma

MDemisay

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Re: Fatigue?
« Reply #11 on: May 25, 2012, 09:15:06 am »
Dear b28,

Immediatlely preceeding my diagnosis by my ENT, and verification by the first interviewee Dr. Golfinos. My initial diagnosis for my tumor size was a large 3.1 AN! I do remember feeling tired but I remember immediately being motivated  by the news and launching into "my summer from hell" in 2004 where I interviewed and communicated by mail with 14 physicians (in an attempt to avoid surgery at all costs). In the end, I did not avoid surgery!! I was operated on and spent Thanksgiving in the Hospital.

I cannot stress enough that this is not necessary (you must limit your interviews) to a number that you ultimately feel comfortable with, that with these resources available now, like the ANA forum, coupled with other sources on the Internet and the ease of sending your MRI scans out, that this process be a lot easier on all of you.

Make use of us here, we are "experts" in that we can give you much needed support (which I didn't realize at the time) ask and confirm our opinions with medical professionals before you procede with treatment.

All in all, it is necessary for all of us to "listen" to what our bodies are trying to tell us (subtly), I  most regret not having acted sooner, I might not have had to have an operation at all, if I had caught it sooner. I might only have had to do non-invasive Gamma Knife or Cyber Knife.

It is essential that you act, don't get into denial once a definite diagnosis has been made, as some of our Acoustic Neuromas are slow growing others fast,

As always, let your gut guide you. God bless all of us on our individual journeys, I wish all of us to have a pain free Memorial Day Weekend!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

chloes mema

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Re: Fatigue?
« Reply #12 on: May 25, 2012, 10:31:54 am »
Lisa, I sent you a note on brain tumor's and fatigue.   I don't have the link anymore to post, just the PDF file.
Basically,  because the tumor is impacting functions of the brain like balance, vision, hearing etc.  Your brain has to work much harder than normal to try and compensate.  As your brain works harder to overcome issues,  it makes you tired.  Your brain telling you it has been overworked and needs a rest. Just like physical activity.  I have found I need much more rest now than I have in the past.   AN's,   the gift that keeps on giving.
Ruport
Good information.  I need to keep remembering this and stop condemning myself for not doing more these days.  I just love the "AN's, the gift that keeps on giving."  Isn't that the truth?   ::)

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

rupert

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Re: Fatigue?
« Reply #13 on: May 27, 2012, 09:38:45 am »

The original link was posted on this sight a couple years ago.  I found the post, but it no longer seemes to work.


http://www.brainsciencefoundation.org/matriarch/documents/bt_and_fatigue.pdf

Doing a search for fatigue on these forums will give you about 44 pages on the topic.  One of the most prevelant side effects.

luttman

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