Author Topic: Tired all the time... taking a poll on this..  (Read 12817 times)

petgroomer

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Tired all the time... taking a poll on this..
« on: February 11, 2010, 08:15:52 am »
Hi all..
Just trying to take a poll as to how many of you were tired post op.  I am in the watch and wait, and over the past year, I have gone from being a 7 a.m. - 2 a.m. girl... needing little sleep, to being a 8 a.m. - 7:30 pm girl...
By 7:30 pm,, I am passing out on the couch.  It is almost painful to try and stay awake,, which trust me,, I can NEVER stay awake.  Feels like bricks are pulling my eyes shut. 
Even during the day, I am feeling so exhausted at work... I sometimes want to just cancel the rest of my day and go home.
If I am actually doing something at night, like a cards night, I tend to get through it.. 
Any idea what may cause this? 
I used to have trouble sleeping (had alot on my mind), now I don't.. lol  I still do wake up in the night, but I am easily able to fall back asleep.
Thanks in advance for any input on this... :)
Rhonda
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

ppearl214

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Re: Tired all the time... taking a poll on this..
« Reply #1 on: February 11, 2010, 10:47:05 am »
Hi Rhonda

I'm going to ask you see this thread:

http://anausa.org/forum/index.php?topic=10572.0


In this thread, there is a link for the "Brain Tumor and Fatigue" brochure, put together by Dr. Peter Black and Nancy Conn-Levin. Many here have gained insight into how fatigue affects ALL types of brain tumor patients (malignant and benign). Many here, over time, have read the brochure (a short/easy read) and have gained from it.... please take a look .... even though your's is vagus nerve (not AN), it still falls in line with this.

Also, I believe you converse with Rick on the CK forums... send him a message and inquire. I believe, if my old-age memory serves me right, he may have run into it as well with his vagus nerve issue.  Just a thought.

Hang in there... I think you will find the brochure very insightful.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

tenai98

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Re: Tired all the time... taking a poll on this..
« Reply #2 on: February 11, 2010, 11:33:26 am »
hi Rhonda
I use to work til 11pm at night, come home( sometimes an hour to get there), and usually play on pc with a cup of tea before hitting the sack @ 1;30am and then up at 630-7ish am....Now post op, I only work 5 hours ( again an hour one way drive, so really its a 7 hour day) home by 9pm in bed by 10 and up at 7am....
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Kaybee

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Re: Tired all the time... taking a poll on this..
« Reply #3 on: February 11, 2010, 12:00:01 pm »
Phyl, thanks for posting that thread.  Rhonda, I too had tremendous fatigue prior to my diagnosis.  I felt tired all the time and would often need a nap right after work otherwise I did not have energy to make dinner.  I just thought I was burning the candle at both ends and suffering from extreme exhaustion.  Then I found out I had a tumor. 
Immediately post op, I slept a lot.  Naps and early bedtime (8:00). I am almost 4 month post op now and my energy level really ramped up.  I don't remember feeling this awake in a long time.  Now I go to bed around 10 or 11, sleep very very well, and rise "almost" effortlessly at 6.  Take good care!
2 x 3 x 4 cm tumor removed at Methodist Hospital in Indianapolis 10/30/09
Left facial paralyis/SSD (showed first signs of improvement at approximately 6 months post-op)

Esperanza

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Re: Tired all the time... taking a poll on this..
« Reply #4 on: February 11, 2010, 12:36:51 pm »
I am w & w and have found I become very tired when I have spells of increased symptoms - like just at the moment.
My husband says I have 7 o'clock legs as when I have sat down after dinner I often barely move!
As I said it does appear to come and go - a few weeks feeling really fatigued and then I'll not be too bad for a while -
hoping when I have it removed things will improve for me as I had a lot more energy before this thing took hold..
Nice to know it appears to be 'normal' though ;)

Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

Jim Scott

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Re: Tired all the time... taking a poll on this..
« Reply #5 on: February 11, 2010, 01:07:22 pm »
Rhonda ~

As you've undoubtedly guessed by now, having an acoustic neuroma or, in your case, a vagal schwannoma and all the compensations your brain has to make to deal with the deficits it induces can certainly cause fatigue, which is what you're describing.  I found that even post op & radiation, I still don't have the stamina I once had.  However, I can attribute much of that to age.  My only suggestion is to adjust your schedule to your body's needs and sleep as much as necessary.  This may infringe on parts of your lifestyle but frankly, that is probably going to be unavoidable.  These tiny tumors are insidiously life-altering, even in the best-case scenarios.  However, they can be handled, as many have, so I'm confident you'll surmount the fatigue obstacle.  

Jim
« Last Edit: February 11, 2010, 04:15:03 pm by Jim Scott »
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.

lawmama

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Re: Tired all the time... taking a poll on this..
« Reply #6 on: February 11, 2010, 04:39:14 pm »
Rhonda,

Before my surgery I was EXHAUSTED all of the time.  It was the most bone-tired, tired I have ever experienced.  It was all I could do to make it until 7pm to fall into bed.  Since my surgery the fatigue is improving, but my energy is not back to 100% of what it was a few years ago.  I plan to try some modifications to my diet and exercise soon and see if that helps.  Also, during my pre-op bloodwork they found that I am pretty anemic, so I need to address that.

I think fatigue is a pretty common symptom.  Unfortunately!   :D

Lyn

9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

petgroomer

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Re: Tired all the time... taking a poll on this..
« Reply #7 on: February 11, 2010, 07:05:49 pm »
Awesome feedback guys and gals!!!!
Phyl, some of the old thread you posted above actually brought me to tears as I read others emotional rollercoaster rides that they are on.  To know that the article brought a light to their dark tunnel was great! 
I read it also and can so relate to so much of it.
To all of you who responded above, I thank you for taking the time out to answer and it is so much of a relief to know we are all of the same symptom pool and can empathize.  :)  I have started a website for vagal schwannomas to give others answers and support as this site has done for me!!!!!!  It is amazing to see how we all share the same feelings and symptoms and fears. 
Please know that I am eternally greatful for all of you and I send this site to any new person that I encounter on the net who as a new schwannoma.
xoxo BIG HUGS !!!
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

petgroomer

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Re: Tired all the time... taking a poll on this..
« Reply #8 on: February 11, 2010, 07:31:00 pm »
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

pjb

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Re: Tired all the time... taking a poll on this..
« Reply #9 on: February 12, 2010, 08:48:17 am »
I too was very exhausted before and after my AN a totally different feeling of exhaustion but at first I just attributed it to just getting older....

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

leapyrtwins

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Re: Tired all the time... taking a poll on this..
« Reply #10 on: February 12, 2010, 10:21:02 pm »
I was never tired prior to my surgery.

Post op, like most, I had major fatigue for several months - but that's perfectly normal due to the long surgery and the anesthesia.

The times I'm tired now are when I just don't get enough sleep; having had an AN doesn't seem to be relevant for me.

When I sleep on my "good" ear, I sleep very soundly because I don't hear anything at all.

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

JerseyGirl2

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Re: Tired all the time... taking a poll on this..
« Reply #11 on: February 13, 2010, 08:57:46 am »
My reaction has been similar to Jan's -- no fatigue prior to surgery; very prone to fatigue for a few months after surgery; and have long since been back to pre-surgery level of energy.

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

MamaGina

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Re: Tired all the time... taking a poll on this..
« Reply #12 on: April 07, 2010, 08:34:26 am »
I have battled fatigue since my 2 brain surgeries to remove the tumor and repair the leak..  I didn't care too much immediately post-op, because I was taking percocet for pain and I had lots of support.  Now that it's been almost 10 years and I still am so very fatigued and dizzy, it's very disheartening.  When I was working, it was much worse.  I would work and that's all I could do.  I had to come home and immediately lay down.  My kids have been neglected for 9 years (I have 5 now).  I was also very ineffective at work due to this fatigue and other symptoms.  I am an RN, and it was so hard.  I would drive to a client's home, and when I got there, I felt like I needed to lie in their bed and go to sleep when actually it was my job to take care of them.  I was always behind in paperwork.  Well, after 9 years of trying to "live my life normally, so my other side would compensate" as the surgeons told me to, I gave up trying to work.  I am out of denial.  I have come to terms that I need to recognize my limitations and abilities as they are now.  I still suffer from fatigue; my family is not taken care of as they should be.  They have been robbed of their mother and wife. I look at all the other mothers and I feel so inferior.  I can't even smile appropriately at my children.  My third daughter would touch the side of my face and ask why it goes down and not up when I smile.  I'm sorry, I know most people on here try to stay positive, but I HATE what the tumor and surgeries have done to me.  I was attractive, energetic motivated and inspired before I went through this.  It has taken so much from me.  However, it gave me my relationship with God back.  Out of desperation and paralyzing fear, I turned to my faith.  I'm just working on the "joy in suffering" part of it :)  Sometimes I think I would have rather let the tumor kill me than go through what the surgeries have caused.  Fatigue is difficult, because you can't explain it to people.  Even my pastor won't accept that as a good enough reason to miss church.  People look at me and don't see my disability (until I smile, but even that doesn't begin to explain how sick I feel).  And I HATE explaining it to people.  It's such a downer.  What can people say to you when you tell them you had a brain tumor?  It's depressing, and I don't want to complain.  I guess that's why I wrote all this here-sorry- I don't talk about it. 
I just re-read this, and really the most important thing in life is God, so I should be grateful.  My flesh is just so weak-it wants to feel right again and have the energy I need to be a wife and mother.  Why does God give me all this to do in life and take away my energy?  It's my thorn.  His grace is sufficient for me; but God help my children (who never have clean clothes to wear, don't bathe enough or brush their teeth enough, because I'm too tired to take care of it.) 
L 3.0 cm AN resection via retrosigmoid approach 10/2000;
CSF leak repair w/mastoidectomy one week later. 
chronic headaches, vertigo, fatigue, facial paralysis, SSD, and more!

Jim Scott

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Re: Tired all the time... taking a poll on this..
« Reply #13 on: April 07, 2010, 01:58:18 pm »
Gina ~

Many hearts are going out to you today and even more prayers are being said that your suffering will abate and your spirit be lifted.  Lean on Him and know that He loves you.  Know too, that nothing is permanent in this mortal life and the way you are now is not necessarily the way you'll be tomorrow - or next year.  Seek His will for your life and please believe that you'll always find non-judgmental friends on these forums who know what you're dealing with because they've been where you are, now - or something close to it.  We want the best for you and support you in our thoughts and prayers.

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.

MamaGina

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Re: Tired all the time... taking a poll on this..
« Reply #14 on: April 08, 2010, 07:19:13 am »
Jim,
Thank you for your encouragement and prayers.  I can tell you are a follower of Christ.  He tells us to build each other up, thus you are in obedience.  I feel embarrassed for exposing so much of my pain.  I've been trying to get on with my life ever since my surgeries, and trying to be the same person I was: working and taking good care of my husband and children. However, it's just not working. 

I don't think denying all these issues and feelings works: coming here for support from others who understand is most likely what I need (when I get a chance ;)).  I always feel better when I see that people can relate, and I am not alone. 

I think yesterday I just wanted to get all those bottled up feelings out into the universe!  BTW, I think I was a bit of a drama queen saying my kids don't bathe or brush.  Sorry.  They don't bathe every day, but they do bathe a few times per week.  The bright side is we are conserving water and oil (used to heat our water).  In addition, they are learning to take care of themselves by providing for their own needs, like brushing, eating, cleaning, laundry.  My 11 year old even knows how to run the washing machine and dryer! 
L 3.0 cm AN resection via retrosigmoid approach 10/2000;
CSF leak repair w/mastoidectomy one week later. 
chronic headaches, vertigo, fatigue, facial paralysis, SSD, and more!

 


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