Author Topic: .... so WHEN will I REALLY begin to feel better?????  (Read 4698 times)

Denisex2boys

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.... so WHEN will I REALLY begin to feel better?????
« on: October 27, 2008, 01:41:59 pm »
... I know it is early ... I am not even two weeks out yet but I am sooo' tired and achey.....  Thank goodness my staples come out this Wednesday ..... I truly am lucky in the respect that I have minimal balance issues - I do get dizzy when doing some of the physio stuff - like standing on one foot with eyes closed .... but I am able to get around by myself which is a huge plus ..... the eye and facial problems are rectifying themselves and I know this is a HUGE plus too.

But I feel so tired, I am not sure if the headaches are still a result of the incision and I am trying to wean myself to normal Advil / Tylenol ..... I am getting up with the kids to help see the off to school and then usually go for about a 5 hour nap from about 10-3 - a few people I have talked to said sleep is normal - even at these amounts.  My face hurts though on the AN side - which I should not complain about since it was completely numb after the surgery - and hearing is very slowly 'maybe' coming back on AN side ...... I am just so tired and achey ..... I am not used to this as I am sure know one was going into this .... bascially walking into a surgery feeling physically healthy and coming out on the other side feeling like a very old achey, tired person......

PLEASE tell me this is all normal ..........
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

Kaybo

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #1 on: October 27, 2008, 02:18:59 pm »
Denise~
It is all VERY normal...& like you said, it hasn't even been 2 weeks!!  Baby steps...sounds like you are doing GREAT!!  Keep up the good work and don't push yourself!!

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!

lori67

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #2 on: October 27, 2008, 03:14:15 pm »
Denise,

It's definitely normal.  I realize that doesn't make it any more pleasant to go through, but it is normal.

It sounds like you've hit the "2 week wall" my doctor warned me about before my surgery.  He said many people feel like they've hit a wall 2 weeks after their AN surgery.  I guess because things seem to progress pretty quickly in those first 2 weeks that we all expect the rest of our recovery to go quickly too and when things start to slow down, we get discouraged.  I know it was a pretty big, brick wall that I hit, but once I got past that point, it was better.

The fatigue does diminish after a while, but your body has been through a lot, so it's going to take a little time.  I had the achey feeling too.  I am pretty sure it was a combination of being on the steroids right after the surgery and from just being more immobile than I'm used to.  Any time I have to take steroids, I get that feeling of my bones aching about a week after I stop taking them, but I have bizarre reactions to steroids anyway.  And since you're a mom, I'm sure you're not used to sitting still for very long, so your muscles are probably just antsy to get back into action.

You eye and facial issues resolving is great news!  You'll get past this crappy feeling.....patience.....it's a hard lesson to learn, isn't it?   ::)

Hang in there!
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.

MAlegant

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #3 on: October 27, 2008, 04:01:44 pm »
Hi Denise,
Yes, it's all normal. I used walking as a recovery tool.  The fresh air and exercise seemed to help me feel stronger even if I did have to take a nap after my walks.  I think at about 3 weeks (when I was finally able to sleep through the night) I started to feel better, but really, at 3 months post op there are still days when I just want to sleep.  The recovery process from this surgery has got to be the slowest, most frustrating thing I could have imagined.  Like you (and many others I bet) I walked into surgery healthy and strong and came out using a walker.  It does get better each day though in very small increments.  I have annoying side effects that hopefully will go away eventually but for now remind me that life is precious. 

Sleep, take walks, eat well, love your family and let them pamper you.  And let the recovery take its own course.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #4 on: October 27, 2008, 06:38:41 pm »
Denise -

as the others have said, this is absolutely normal.

I found that the fatigue hung around for a long time - longer than I thought.  Patience, while hard to come by some days, is key.

You'll get through this; hang in there.

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

Jim Scott

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #5 on: October 27, 2008, 07:40:38 pm »
Denise:

I like to say that 'normal' is a relative term when dealing with an acoustic neuroma - and that includes the recovery period.  However, I'm an impatient type so I can empathize with your frustration.

I know from reading many posts over the past few years that a prolonged period of fatigue is quite common, even 'normal' for post-surgical AN patients, so you're not an exception.  I had some post-op fatigue but willed myself past it (with lots of little naps in-between).  I didn't tackle anything that required real exertion for about two months post-op, although I looked and felt fine.  I knew my limitations.  I kept pushing past them, but not to the point of being foolish and setting back my otherwise rapid recovery.   Time will pass and you'll feel stronger and better.  We all do, eventually.  :)

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.

Debbi

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #6 on: October 28, 2008, 08:23:28 am »
Denise-

Just give yourself lots of slack right now.  Your body will guide you through the recovery, and - yes - it will demand that you take way more naps than you've probably taken since you were a small child.  Remember that not only have you gone through the physcial trauma of major surgery AND lots of anesthesia and other drugs, but your brain itself is also trying to adjust to the new "norm."  If you talk to anyone who has been through any sort of brain surgery (not just AN) you'll hear a common theme that the fatigue is shocking. 

Don't get discouraged, Denise - you'll get through this.  Just give yourself some time - and lots of naps!   ;)

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

wendysig

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #7 on: October 29, 2008, 06:45:18 am »
Hi Denise,
I dont't really have anything new to add -- what you are going through is normal.  I understand you want to get better and move on but your body will make you slow down if you don't give it the rest it needs to heal.  Patience, patience, patience.

Sending healing thoughts your way,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Omaschwannoma

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #8 on: October 29, 2008, 09:01:02 am »
Yep, everyone here is telling you the truth.  Let me add to this my experience.  I was helped by closing my eyes (sitting down of course) for 5 minutes or until I was so moved to open them.  I did this NUMEROUS times during the day in the beginning and this really helped to shut out all the confusion, gave me energy again to get up and "do". 

Cheers!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Tamara

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Re: .... so WHEN will I REALLY begin to feel better?????
« Reply #9 on: October 29, 2008, 09:32:16 am »
Hi Denise,
  Yep, you're normal.  My advice is to not just nap, but to ENJOY those naps.  When else will you be able to do this?  I pretty much think that sleep is the best medicine for just about anything.  Every time you sleep, your body has a chance to mend.  Therefore, lots of sleep = lots of healing! ;)

You'll get there soon - don't fret!
Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...