Author Topic: When does the fatigue go away?  (Read 4050 times)

Nancy Drew

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When does the fatigue go away?
« on: November 15, 2008, 04:43:54 pm »
I had GK on Oct. 21st (see signature below).  I have done pretty well overall, but the fatigue really gets me down sometimes.  Often I wonder if it is more mental fatigue than physical.  Whichever the case may be, when do you typically get your mo-jo back?  I try to get a walk in every day, but I wonder if I should push myself more physically.  My walks are kind of short, and it feels like I have lead in my shoes.  Interested to hear what others have to say about getting out of the fatigue mode.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

sher

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Re: When does the fatigue go away?
« Reply #1 on: November 15, 2008, 10:47:09 pm »
I had CK the end of October and I still have bouts of fatique. I have been fearful of walking outside as I have fallen many times pre-ck just by stepping on a rock or just stepping wrong. I am starting to walk on the treadmill, but have that lead in my shoe feeling often. I am hoping it gets better, as I was a very active person. I just push through it the best I can.
Hang in,
Sher
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

Nancy Drew

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Re: When does the fatigue go away?
« Reply #2 on: November 16, 2008, 05:13:21 pm »
Hi Sher,

Thanks for sharing.  What a journey this is and not knowing what to expect is the hardest part IMO.  I had a good day today, and I decided to take it for what it is and savor it.  Hopefully each day will get better.  While I was out walking earlier, I had a thought about the lingering fatigue.  My son is being deployed in Dec., and I think it is possible that I am getting AN symptoms mixed in with this emotional situation which is pulling me down.  I have read here on the board that many folks have had their treatment in the middle of a divorce, while caring for a sick spouse or child, etc.  With all of these stressors going on along with AN issues, I am sure it can drain the body and perhaps get in the way of the healing process...both mentally and physically.  I guess there is no "ideal" time to have an AN, so to say!

I think the insight today may have been what I've needed to help me push through and not blame every little thing on this AN.  I guess the best thing to do is to take time to relax, lots of deep breaths and go with the flow.  Wishing the best for you.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Jim Scott

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Re: When does the fatigue go away?
« Reply #3 on: November 17, 2008, 05:24:30 pm »
Nancy:

I concur with your conclusions.  The AN healing process following radiation or surgery does drain the body and leaves little energy for much else, which can be frustrating when you're trying to regain normalcy. I know from experience that stress is a huge contributor to fatigue.  I've had jobs that were highly stressful.  I would come home literally drained of energy after a day at (non-physical) work.  I eventually learned to avoid those kinds of situations (even if it meant foregoing a promotion) and also employing techniques to hold down my stress level on my own by not allowing situations to cause me intense anxiety.  Not easy. 

However, some situations are both stressful and unavoidable, such as your son being deployed next month, and these can easily lead to a state of fatigue for someone trying to recuperate from AN-related radiation (or surgery).   I like your decision to 'go with the flow' and carpe diem, both valid attitudes when we are determined to surmount our deficits, whatever they may be. 

I think you'll be O.K., Nancy.  :)

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.

Sue

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Re: When does the fatigue go away?
« Reply #4 on: November 18, 2008, 03:15:16 pm »
Nancy I am sorry you are having problems and really sorry your son is being deployed soon.  That certainly can't help matters.  Our brains and system all process what has happened to us at different rates and in different ways, as you already know.  It just is a slower process for some people.  No matter which treatment you would have chosen, this is true, I think.  You will be better in a week and in a month and the month after that, but it might be in really small increments or one big gigantic leap.  It all depends on how your system responds to getting zapped. All you can do is just do the best you can each day and don't worry about it.  It'll get there eventually. 

Hang in there, it'll get better.

Sue in Vancouver, WA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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lori67

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Re: When does the fatigue go away?
« Reply #5 on: November 18, 2008, 04:24:43 pm »
I expect my fatigue will go away when the youngest of my 4 kids leaves for college.  She's only 2 years old, but I'm hoping she'll be a Doogie Howser and finish college around age 13.  Maybe after that, she'll find a cure for AN's.  Hey, I can dream, can't i?

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.

Nancy Drew

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Re: When does the fatigue go away?
« Reply #6 on: November 18, 2008, 06:18:09 pm »
Thanks for the words of wisdom.  I am finally "getting" this whole day to day thing!!!  I had a good day yesterday and today.  Maybe I am on my way! :D

Lori, What is a nerve jump?  Hopefully your daughter will find the cure for ANs at 13, but if not, 16 will be OK.  But, then again, medical research and getting a driver's license at the same time!  Sixteen was the age that almost did me under!!!

Sue,  Have you had any problems with your pin sites?  The ones on my forehead are tender when I touch them.  The back ones don't hurt, but I can feel an indentation where they were.

Jim,  You always have such great insight. Carpe Diem!!! ;D

Nancy D.   
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Joey

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Re: When does the fatigue go away?
« Reply #7 on: November 19, 2008, 12:54:59 pm »
Hi Nancy - Since I was a week or two ahead of you GK wise, thought I'd drop by and say I'm really doing better now.  Fatigue at times, yes; the only really good thing is, don't need sleeping pills any more!!  I had my hair done, the colorist noticed I (still) had scabs in the back, but that didn't stop me.  I still notice a very strange numbness throughout the top of my head, but the pin sites themselves have healed nicely.  They look like freckles on my forehead, oh wait, they are probably just thought by others to be those danged age spots.  Whatever.  My hearing is about the same as always, but I notice a persistent fullness/muffled sensation that probably always will be with me and that's ok.  I am now down to just OTC ibuprofen, which does seem to help, taking a strong dose nightly and start the day feeling good.  By nighttime, the tinnitus and the fullness seem markedly worse, or else I'm just tired and more negative about it.  I'm trying to stay on an even keel and not obsess. Hoping all is well with you and you are staying happy!   ~~Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

Tumbleweed

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Re: When does the fatigue go away?
« Reply #8 on: November 19, 2008, 09:51:26 pm »
Nancy, I had CK, not GK, but they are very similar. I was profoundly fatigued for 1 full month after treatment -- so much so that anything but the shortest walk (a few minutes and no more) was too much for me to do. At the one-month mark, I began to suddenly get my energy back. At around the 2-month mark, my energy had recovered at least 95%. Now at 4 months post-CK, I essentially feel as energetic as I did before treatment.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Pascale

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Re: When does the fatigue go away?
« Reply #9 on: November 20, 2008, 01:37:37 pm »
hello
I did CK too (sept 8th) and it's taking me about one month/ one month and a half to start getting better. I would get really tired after a walk at the mall or just errands. But I feel that it's getting better.

Don't worry, it's normal to feel tired. Even though each ones of us are different, just take it easy and listen to your body. Don't push it. If it needs rest, then rest. It's the best thing to get a good recovery. I felt that taking vitamins and drinking powerfull juices made with my super duper awesome juicer helps a lot :D

take care
Pascale
2.1 x 1.8 x 1.7 cm AN.
CyberKnife treatment completed on 09/12/2008 with Dr. Chang and Dr. Gibbs at Stanford.

:D

Nancy Drew

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Re: When does the fatigue go away?
« Reply #10 on: November 20, 2008, 02:08:48 pm »
Wow,

I think I can finally agree about the time frame of about a month or so.  I am feeling better every day.  I have had a couple of days where I have felt like I did before GK.  I took a longer walk yesterday, and I did pretty good.   Crowds are terrible.  Last night I had nine ladies over for a book club.  With all of the "jabbering", I could hardly understand what was going on at times.  I only knew one of the attendees (she recruited the club members) so no one knew about the AN.  I didn't go into detail about the AN, but I told them I have a difficult time hearing.  Since the club will be meeting at my house every month, I now have a designated sitting spot of the couch so I can hear better with my good ear.  I don't really have any problems with volume, its the word discrimination that throws me off.  But, I had the same situation before GK.  Seems like sound and discrimination are more magnified in crowds.  Perhaps it is something I will have to get adjusted to.

Thanks for the heads up about the time frame with the fatigue.  I am glad you are feeling better Joey.  I was getting worried about you.  I am getting my hair colored tomorrow, and I am interested to see if my hair stylist can find those indentations on the back of my head.  I guess I was lucky because I didn't get any scars on my forehead.  Maybe they are hiding in the wrinkles :D

Nancy 
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs