Author Topic: fatigue normal?  (Read 13564 times)

MMH747

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fatigue normal?
« on: August 01, 2009, 09:27:55 am »
I had translabyrinthine surgery for an acoustic neuroma that was 2.7 cm x 1.7 cm on 5-20-09.  As my hearing and balance had been quite diminished prior to surgery, I have adjusted to the total loss of hearing and balance issues well after the surgery.  However, my facial nerve is unresponsive leading to challenges in eating, chewing, talking, and, of course, the dry eye.  I found this forum really helpful in finding suitable eye drops and other hints.  Also, I am encouraged that there may be hope for the facial nerve to regain some function as it is only 2 months post surgery for me.  I still am fatigued and lack the energy or ambition to do a great deal.  I do try to walk @ 1 1/2 miles a day and do plan to go back to work  (part-time) in another week.  I talked with a nurse at my surgeon's office regarding my concerns about the fatigue I'm experiencing.  She stated that this is not normal, and that except for the facial nerve issues, I should be fine.  Is fatigue and having emotional ups and downs part of the healing process with acoustic neuroma?   I'm trying to get out more, but I get despondent when I cannot smile or have difficulty with eating or even talking.  Friends and relatives are very supportive and think I am getting on well.  But now when I hear this nurse telling me I should not be having this fatigue any more, I'm frustrated and distressed.
Diagnosed March-09 with 2.7 cm x 1.7 cm tumor; Translab surgery (13 hours) - UW Hospitals & Clinics - Madison, WI on May 20,2009;  unresponsive facial nerve post-surgery; doing well with hearing, balance, and taste loss

Cheryl R

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Re: fatigue normal?
« Reply #1 on: August 01, 2009, 09:55:07 am »
You are doing fine!              Someone who has never had this surgery has no clue about how it feels.      Everyone varies in how it goes for them afterwards.    Yes it maddening to think one should be all ok  at 2 months and why am I not yet.         Plus having the other issues with the face makes it even harder.            We didn't know how hard this can be for a time afterwards and sometimes it takes longer to get better than we ever thought it could be!                 
I am a now retired nurse but had no knowledge about ANs till I have had them too.        Be good to your self now!
                         I wish you well,     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

NancyMc

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Re: fatigue normal?
« Reply #2 on: August 01, 2009, 09:57:43 am »
I, for one, have not regained my pre-op vim and vigor.  You are able to walk a mile and a half, so I'm not terribly worried about you.  
But please be reassured that fatigue and lack of motivation and a sense of being overwhelmed by all that I need to get done have continued to be a problem for me.  Just do the best you can, eat a healthy diet, surround yourself with positive people and things that make you happy, continue to get exercise, watch good movies, read a good book, and keep practicing your smile.
I thought I was all better at eating until local corn came into harvest last week.  Now I'm biting my lip again.  But it's worth it.  Yummmm!
Also, whenever I swim underwater my eye gets irritated, so it must not be closing and sealing.
Good luck.
Hang in there,
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

JerseyGirl2

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Re: fatigue normal?
« Reply #3 on: August 01, 2009, 10:02:02 am »
  I talked with a nurse at my surgeon's office regarding my concerns about the fatigue I'm experiencing.  She stated that this is not normal, and that except for the facial nerve issues, I should be fine.  Is fatigue and having emotional ups and downs part of the healing process with acoustic neuroma? 


I think just about all of us on this forum would give you a resounding "YES!!" Fatigue and emotional ups-and-downs seem to be very much a part of the recovery process (and I would venture to add that this is true for almost all types of major surgery). It sounds as though you're coming along fine -- please don't be too hard on yourself, and definitely rest and take naps when you feel the need -- and I hope you've read enough postings on this forum to be quite optimistic about your facial nerve situation. I don't want to criticize the nurse in your surgeon's office ... but her response strikes me as rather odd.

You'll be fine -- just don't rush things!!

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

Jim Scott

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Re: fatigue normal?
« Reply #4 on: August 01, 2009, 12:43:32 pm »
MMH ~

I'm afraid your surgeon's nurse doesn't know what she's talking about.  Your daily 1½ mile walks and intention to return to work next week (albeit, part-time, which is prudent) are clear evidence that your recovery is proceeding at a normal pace.  My neurosurgeon told me, quite forcefully, that post-op recovery was measured in months, not weeks.  Although I had a complication-free surgery and recovered rapidly, I never regained quite the same level of energy and stamina that I had prior to the surgery.  I attribute some of that to my age (66) but I'm physically fit with no medical issues to deal with so I have to believe that the 9-hour AN removal surgery had a long-term consequence.  I'm still grateful for a successful surgery (and subsequent irradiation) and that I came through as well as I did.  My doctor was ecstatic about my good surgical/radiation results and fairly quick recovery.  So was I.  :)

The emotional roller coaster you're experiencing is quite familiar to almost all post-op AN patients.  Even in light of my successful surgery and good recovery, immediately post-op I had a few weeks of weird emotional responses and some slightly embarrassing behavior (grouchy beyond belief) that I later had to apologize for (to my ever-patient wife).  So, I believe you're normal - and if you have any lingering doubts, by all means consult your surgeon, not his nurse, who may be a fine nurse and a wonderful human being but simply doesn't understand the long-term ramifications of this serious surgery (AN removal).   One hopes your neurosurgeon does and can assure you that your recovery is proceeding normally. 

I suggest that you try to look toward the future and know that whatever you're dealing with now will very likely improve in a few weeks or months...but it will get better and that you won't always be this way.

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.

CHD63

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Re: fatigue normal?
« Reply #5 on: August 01, 2009, 02:30:58 pm »
MMH .....

Just want to chime in that fatigue and the emotional roller coaster are certainly considered "normal" following AN surgery!  Glad you found us on this Forum so you will know that you are not alone.  The walking is good as it really does help with the recovery process, but remember to rest adequately in between times.

Unless someone has had brain surgery, they really cannot fully understand that it is quite different from having other types of surgery.  With AN removal, you are dealing with many system-wide issues ..... all of which take tremendous energy, thus the constant fatigue.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Syl

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Re: fatigue normal?
« Reply #6 on: August 01, 2009, 02:39:50 pm »
MMH:

I, too, disagree with the nurse's opinion about fatigue. I'm just over a year post-op, and it wasn't until recently that I began to regain my energy. I thought that I would suffer from fatigue forever. I still do have setbacks, which hit me when I overdo it with physical activity. It takes me days to recover from the fatigue, but I do recover.

As for your facial nerve...I've learned on this forum that the facial nerve is more resilient than the hearing nerve. Give it time.

I was on medical leave for 2 months. When it was time to go back to work, I didn't think I was ready, but I went back as originally scheduled. It turns out that getting back into that routine helped me with my ambition to do more. It wasn't easy, but for me it was btter than sitting at home and wondering when I would feel better. Going back to work helped me get better.

Forget about what the nurse told and be patient. It does get better.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

mimoore

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Re: fatigue normal?
« Reply #7 on: August 01, 2009, 08:43:12 pm »
Welcome!!!
WOW!!! That nurse has no idea what she is talking about! I suffered fatigue, and I know others have so don't be hard on yourself. Listen to your body and be extra kind to yourself. I have experienced some depressing times after surgery. I did not expect facial paraylsis and was devasted. I went on anti- depressants, and went back to work as a kindergarten teacher (droopy and deaf).
After the dust settled and I had a chance to access the situation (when I found out about the tumour I went into fighter mode and didn't have much of a chance to take it all in) it was sometimes hard to take in. I had a brain tumour-shocking!
I understand and we are here to support you!
Michelle ;D
When was your surgery?

« Last Edit: August 05, 2009, 03:29:47 pm by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

leapyrtwins

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Re: fatigue normal?
« Reply #8 on: August 03, 2009, 06:50:55 am »
Fatigue is VERY normal - and it can last for a long, long time; many, many months post op.

Depression is also a very common post op side-effect as is frustration.

Don't get discouraged, lots of us were in the same boat as you are in now.

Stick around the forum - it helps!  We're here for you.

Best,

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

MMH747

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Re: fatigue normal?
« Reply #9 on: August 03, 2009, 10:25:15 am »
Thanks to all who responded. I needed some validation that what I was feeling was indeed normal.  Your support and encouragement, along with the Forum and the info at this web site have been so comforting.  Even though I can't smile physically, I wish you all smiles!  Thank You! :)
Diagnosed March-09 with 2.7 cm x 1.7 cm tumor; Translab surgery (13 hours) - UW Hospitals & Clinics - Madison, WI on May 20,2009;  unresponsive facial nerve post-surgery; doing well with hearing, balance, and taste loss

ernie h

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Re: fatigue normal?
« Reply #10 on: August 03, 2009, 02:34:43 pm »
mmh747 i agree with the group.fatigue and emotional roller coaster ride.i completely loss my r/side hearing but not until two weeks after surgery.i also temoprarily lost my r side facial control.but the were able to bring it back with another course of decadron.i only had it for a few weeks so i can sympathize with you.it's certainly a set of struggles for all the reasons you spoke about.give yourself and body the time it needs.go at a pace that's comfortable for you.i know it's hard.it's not even easy to tell you that.because it's an isuue i also struggle with.best of luck with your recovery i pray it's a short and successful one ernie h.
ernie.r side ana removed aug 07 by dr peter black and doctor quinton gopen.brigham and womens hosp boston mass.

Dantheman

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Re: fatigue normal?
« Reply #11 on: August 06, 2009, 09:27:47 pm »
MMH747,

I had my trans lab surgery in Feb of 2007 and still suffer from chronic fatigue. Your only several months out and my find as time goes by your stamina improves. Recovery is very individual for us.

Dan
Diagnosed 12/08/2006. 1.7 cm Right Side AN.
Trans-lab performed on 02/13/2007 by Dr. Lawrence Meiteles and Dr. Raj Murali at Westchester Medical Center, Valhalla, N.Y.
TransEar worn since 4/17/07.

4cm in Pacific Northwest

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Re: fatigue normal?
« Reply #12 on: August 06, 2009, 10:33:29 pm »
I agree with the group... nurse has no idea.

You sound normal for post AN surgery to me too. I am pretty well 90% back to who I was pre-surgery 2 years ago. However when I get a cold that affects the ears nose and throat- I regress- as does my energy and balance. But then I heal and move forward. High altitude has me a little weird too- so I will just stick to the ocean beach  ;)

Between months 3 - 6 I was still needing afternoon naps and could not possibly imagine to have been working full time then... it was enough to the do the domestic tasks at home for a family ...and that was with help. If you are not up to returning full force to work- you should discuss this with the physician (skip the nurse!)

You are doing the right thing by walking every day.

This was not a knee surgery- but a "brain surgery". Neurological healing takes longer than muscle healing. Nevertheless healing does happen. Now your brain is having to retrain and adapt to balancing all day with just one vestibular nerve now.

Hang in there- it will come eventually. In the meantime know that it is always OK to post with us- we have been there and certainly can offer more empathy, understanding and first hand experience than "the nurse" you mentioned.

Keep moving forward.

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!

MMH747

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Re: fatigue normal?
« Reply #13 on: August 15, 2009, 07:15:29 am »
Thanks to all for the insight and encouragement.  I went back to work this past week and though it was only 3 days and 13 hours total, at a desk job, I was exhausted.  Each day I came home and cried, almost unable to do anything else.  Long naps and just resting at home helped, but I feel so useless.  It is hard to describe this feeling of fatigue to others - not really tired, but just unable to do much.  This week I've also experienced that terrible metallic taste in my mouth along with tightness in my head.  I was encouraged to read one reply that stated the metallic taste seemed to come about the same time the nerve was starting to come back, so I am hopeful.  I'm hoping this next week will go better, and perhaps getting back into a routine will help. 
Diagnosed March-09 with 2.7 cm x 1.7 cm tumor; Translab surgery (13 hours) - UW Hospitals & Clinics - Madison, WI on May 20,2009;  unresponsive facial nerve post-surgery; doing well with hearing, balance, and taste loss

Debbi

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Re: fatigue normal?
« Reply #14 on: August 20, 2009, 05:07:33 pm »
Be patient with yourself!  Fatigue is very normal, especially with any kind of brain surgery.  When you add in things like hearing loss and facial nerve damage, it is no surprise that the brain finds it necessary to call a "cease fire" on activities.  I was still napping for several months post surgery.  And, even now, nearly 1 1/2 years post, if I really overdo things, I will be extremely tired.    Don't get discouraged by the first few days back at work - it just takes time.

Sending you healing, restful thoughts from NJ...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

 


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