Author Topic: fatigue normal?  (Read 13552 times)

Patti UT

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Re: fatigue normal?
« Reply #15 on: September 01, 2009, 05:06:40 pm »
The fatigue is totally part of the "new normal"  I am almost 5 yrs post op and still suffer from it.  I have given it my own definition and call it "sensory fatigue"  With having to constantly monitor your every move, every step due to the vertigo/balance, and the constant screaming tinnitus, headaches,  occassional pressure cooker brainwrecks with  barometric pressure changes, trying to hear people in noisy places, and the list goes on and on.  By the end of the day, your brain is just plain tired from sensory overload.

I am about to embark on surgery #2 and dread the initial fatigue one goes through after surgery.  At least this time I know what to expect.

I have one thing to say about the nurse..........  ask her how HER fatigue was after HER brain surgery,,,,,,if she can't answer tell her not to make judgement (and dismiss)  on something she has not expereinced.  AND THAT GOES FOR THE DOCS TOO!!!!!

at about 18 mo post op I went in to my doc complianing about the fatigue and the cognitive issues I was dealing with just to be told , and I quote " well we didn't cut into your brain so this type of surgery would not cause any cognitive problems"
OH REALLY?????????????   how about elevating my brain and holding it squished to one side for 8+ hours,  ya think that could cause any problems....... ya think???   I really get tired of the matter of fact, compassionless way about some of the medical folks.

these docs, I tell ya,  just a different breed of folks.  But God Bless them, we wouldn't be here without them
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

4cm in Pacific Northwest

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Re: fatigue normal?
« Reply #16 on: September 01, 2009, 08:38:50 pm »


I am about to embark on surgery #2 and dread the initial fatigue one goes through after surgery.  At least this time I know what to expect.


#2?  Wow! BIG HUGE HUGs!

We are here for you on the forum.

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

moe

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Re: fatigue normal?
« Reply #17 on: September 01, 2009, 10:37:56 pm »
MMH,
The fatigue thing is normal. For me 3 years post surgery- I need that nap and  I factor in a nap every day. If I don't get one, I feel it the next day.
Come to think of it, I've always liked my naps.
The emotional fatigue is probably what gets me with SSD, tinnitus, facial paralysis.

You are doing great BTW!!!!!
There will continue to be good days and bad days, and just see how it goes as time goes on.
If I've had a busy day, I come home and am
BLAH
The only word I can use to describe it.
ZOMBIE comes to mind to! Ah well, I am what I am, is what I say.......
Keep up the great recovery.
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

ernie h

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Re: fatigue normal?
« Reply #18 on: September 02, 2009, 07:27:39 am »
i agree with all that patty has stated.i've heard it all myself.if it were one of their own family they may see things differently. ernie h.
ernie.r side ana removed aug 07 by dr peter black and doctor quinton gopen.brigham and womens hosp boston mass.

yardtick

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Re: fatigue normal?
« Reply #19 on: September 02, 2009, 09:39:00 am »
I'm like Maureen, three years out and I still need naps.  I think I have developed an allergy to any sort of strenuous activity, it knocks me on my back for several hours  :P

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

rjbarker

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Re: fatigue normal?
« Reply #20 on: September 10, 2009, 08:30:12 am »
We tried to address  fatigue problems :) in some ANA/NJ newsletter articles: issues for Jan 2005, June 2004, Sept 2008. These can be viewed at www.ananj.org.

Patti UT

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Re: fatigue normal?
« Reply #21 on: September 10, 2009, 07:52:38 pm »
So I have decided that I am fatigued beyond the fatigue I live with daily post surgery, even 5 yrs out.  Thinking about going in to have this surgery done a second time is wearing me out.  I wante to wait till Jan, but don't think I can do it.  Thinking if I have to do it, maybe I should just get it over with and get started on that road to rcovery which was for me, very long and really didn't have an end.
  Just feeling very tired and venting a bit I guess.

patti ut
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Kaybo

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Re: fatigue normal?
« Reply #22 on: September 11, 2009, 06:55:28 am »
I know this is WAY past the time this was posted, but I just now am not too tired to post!!   ;)

I still struggle with fatigue, but don't usually have time for naps.  However, at night when I am done - I AM DONE and I can't find the bed fast enough!!  I also use the weekends to recharge - I still am VERY active but if I can sleep in a little later or get a Sunday nap, then my whole week goes better.  I am over 13 years out, but as the doctors told me (several different - even family friends that didn't have anything to do with the surgery), I will ALWAYS be more tired than most at the end of the day.  Even if your body compensates for your balance, it is still a daily compensation and requires double the energy because that one nerve is doing double the work.  Factor in that I had a stroke and it is no wonder that I get really tired.  I really haven't let that stop me though, I just try to balance my time better...I went back to work after 3 months - teaching 1st graders - NOT a desk job! - so I didn't have the luxury of naps.  Also, the doctor wouldn't put me in therapy until then so I would teach ALL day and then go downtown for PT - needless to say, I would go home & sleep until it was time to get up & do it all again the next day!!  Dave & I can vividly remember our 2nd Anniversary (which most peopel really can't) because I was in bed asleep and he ate take-out Chinese food and watched TV - WHOO! good times!  ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

kahekili

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Re: fatigue normal?
« Reply #23 on: September 16, 2009, 05:55:30 pm »
Aloha:
Finally...someone has mentioned "metallic taste" or loss of taste altogether.  I explained this to my doctors here in Hawaii and they had no idea what was going on.  This sucks big time.  Just viewing all the responses in this web site has helped me immensely!  Trying to explain all of this to a "normal" person is just about impossible.

Thanks again for the continuing help.  This is my first day on the site and it has already made a difference.

"E ola ia oe...long life to you."

mk

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Re: fatigue normal?
« Reply #24 on: September 16, 2009, 06:53:19 pm »

"Metallic" taste, or loss of taste, or a burnt feeling in the tongue are not very common with ANs, but it does happen and lots of us have experienced it. This was actually my presenting symptom and when I went to my family doctor he had no idea what I was talking about of course. I found out afterwards that it is all associated to the lower branch (mandibular(?)- if I remember well) of the trigeminal nerve (cranial nerve V). Once the AN starts to press  on the trigeminal nerve on its route entry to the brainstem, symptoms such as altered taste, numbness in the face and dry eye may appear. They are all due to reduced sensation, because the trigeminal nerve is a sensorial nerve. I hope that I am not being too technical, and that this makes sense. Next time you talk about it to your doctors, you can explain it to them and they will hopefully get it finally.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

 


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