Author Topic: Who has regain good balance after surgery to remove AN?  (Read 7949 times)

tincupal

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Who has regain good balance after surgery to remove AN?
« on: April 16, 2016, 05:18:06 pm »
Hello All,

I'm new to the board & was just diagnosed last Thursday. I'm leaning toward surgery to remove the AN. My main problem at this time is balance issues and disequilibrium. When my head moves to much I lose focus & then the balance goes. haven't done any sports for almost 2 months.

so my question is:

How many of you have your balance back after removal of the AN via surgery?

I ask this because most responses on the board still indicate a lot of balance issues after treatment.

Thanks, Al
11 x 4 mm AN diagnosed April 14, 2016 on right side. Some hearing loss, tinnitis, balance issues, no sports.

volleymom

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Re: Who has regain good balance after surgery to remove AN?
« Reply #1 on: April 17, 2016, 06:39:34 am »
Hi Al,
I think the more active you are, the better your balance will be after surgery. Start out by just walking alot. There are vestibular exercises that you can do to help your brain and balance once you are up and walking after the surgery. You might also need to do gaze stabilization exercises, I did for a few weeks.
I don't have perfect balance at 6 years post-op, but I can do most things that I try. I can ride a bike, cross country ski, kayak, lift weights, TRX class, Tai Chi, yoga, swim laps,and this week I tried Zumba class and did OK. Last summer I tried standup paddleboarding on smooth water and I was excited that I didn't fall off.  I work fulltime as a nurse and don't think that people notice my slightly uneven gait.
I do find that I get tired more easily with activity. I try not to walk around in the dark without a night light, because I use my eyes to go straight. I feel panic if asked to stand on a ladder to paint the ceiling or if I am standing in shallow moving water. I use a rearview mirror on my helmet for biking, so I don't have to turn my head much to see behind me.
Hope that this is encouraging to you! While you are waiting for surgery maybe you can do stationary bike or rowing. And google vestibular exercises to practice challenging your brain to balance with one balance nerve.
9mm X 16mm diagonsed in August 2009.  Retrosigmoid Nov, 2009 at OHSU in Portland, OR.
post-op had some facial nerve weakness, nearly resolved. Mild tinnitus. Left sided deafness.

bethtretrault

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Re: Who has regain good balance after surgery to remove AN?
« Reply #2 on: April 17, 2016, 11:32:46 am »
I had retrosigmoid in Nov 2015 and my balance is almost totally normal. It is more challenging to stand on one foot and walk around in the dark but other than that I am good! After LOTS of walking during recovery I am now back to taking classes at the local YMCA. I don't do any that would cause me to change position really fast but am able to do a Barre class and Pilates without any issues.  :)
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

tincupal

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Re: Who has regain good balance after surgery to remove AN?
« Reply #3 on: April 18, 2016, 09:42:04 am »
Hello volleymom & bethtretrault,

Thanks very much for your replies. This is encouraging to see people with surgery get back to somewhat a normal life. By the way - I played Pickleball yesterday for the first time in 8 weeks. wasn't too bad if I didn't run around much. hand eye coordination was pretty good. should have tried sooner. we’re playing in a tournament tomorrow so I needed to try.

Thanks again.
11 x 4 mm AN diagnosed April 14, 2016 on right side. Some hearing loss, tinnitis, balance issues, no sports.

Eddie

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Re: Who has regain good balance after surgery to remove AN?
« Reply #4 on: April 18, 2016, 10:51:42 am »
I had surgery about 4 months ago, and i would say i've gained back balance after the first month?

I'm fully back at the gym now lifting weights, and able to to run/sprint fine on the treadmill and outdoors. Definitely walk as much as you can after surgery and that'll help with the recovery process.
-July 2015 - Woke up with congested left ear and lasted about 2 weeks - then came Tinnitus
-9/16/15 - ENT doctor diagnosed with Tinnitus
-10/2/15 - MRI Scan reveals 2.4 X 2.4 x 2.2 cm AN
-12/8/15 - Surgery NYP Dr. Michael Sisti
-12/9/15 - 100% tumor removal all nerves saved :D

areles

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Re: Who has regain good balance after surgery to remove AN?
« Reply #5 on: April 18, 2016, 03:54:44 pm »
my son's balance was barely impacted at all.  he was a little off for a week or so, but and at this point (eight weeks post op) is back to normal in that regard.  he's skating, and will be able to surf once he's cleared to go back in the water.  he sometimes loses his balance for a second, but it's rare, and only for a second.  he doesn't even really have issues in the dark, from what he tells me.

his tumor was large and he's been skating for fourteen years and surfing for eight, so these things combined probably went a long way toward aiding his recovery.
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

Neet

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Re: Who has regain good balance after surgery to remove AN?
« Reply #6 on: June 28, 2016, 09:18:39 am »
I had Gamma Knife treatment a few months ago and vertigo and balance are much improved, although Tinnitus is just as bad. Mustn't grumble!
Also I have found from the very beginning, that I am affected by sudden changes in air pressure- sudden heavy showers etc- give me the wobbles, but it passes.

Tod

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Re: Who has regain good balance after surgery to remove AN?
« Reply #7 on: June 28, 2016, 07:20:29 pm »
It was a good year before I felt my balance was really solid. Saying that, it was about seven months post surgery that I was able to juggle 3 bocce balls while descending and ascending the stairs three times each before dropping a ball. The more you walk, the more you challenge yourself and rest appropriately, the better you will be.

I started playing golf again last year after a 12 year layoff (in part because of pre-surgery balance issues) and balance is more than sound enough for that.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Greece Lover

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Re: Who has regain good balance after surgery to remove AN?
« Reply #8 on: June 29, 2016, 07:26:37 am »
I'm about seven weeks out from surgery. I'm very solid on my feet but still have trouble turning my head. It's slowly getting better. I think it's different for everyone.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

dredfern

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Re: Who has regain good balance after surgery to remove AN?
« Reply #9 on: June 29, 2016, 09:13:08 pm »
Al,
Sorry to hear you've got one of these too.  It's not the best news you'll ever get but I would be encouraging.  I had to wait 8 months for my surgery after being diagnosed and just finally had it a month ago.  I was, like everyone else, very apprehensive of the results.  I am an arborist by trade so spend my time high up in trees swinging on a rope with a chainsaw.  This requires a lot of balance. 

Like I said, I am 4 weeks post op and my balance is totally fine. I do have some dizziness still on rapid movements of my head but I can stand on one leg, I use a balance/wobble board and can do most tasks with my eyes closed on one leg even (such as brush my teeth).  I did make an extended effort to challenge my balance prior to surgery though with exercises and i guess my job helped too in that sense.  We're all different and some people on here have it real bad. I was lucky.  The worst thing for me now is I have a CSF leak and am waiting for another surgery.

Good luck, Dan
3.5cm Left side Acoustic neuroma
Translab' removal 1st June 2016
Very successful, no complications.

sheren

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Re: Who has regain good balance after surgery to remove AN?
« Reply #10 on: December 23, 2016, 09:26:44 am »
hi,

balance was a great deal to me as i am a dancer. i removed my tumor last feb and to be honest, my balance was so bad i had to start learning to walk again. i was losing hope but kept going for my vestibular therapies and in two weeks, i was all fine. i could walk normally, go shopping and even went out for a couple of drinks. i guess practicing your therapies and keeping active really helps(: im almost a year past the surgery and im back to dancing. good luck!
Translab surgery done on 24th february 2016 when I was 24 years old.
3.4cm tumor on the right
Dr Friedman & Giannotta of Keck Hospital USC

sharonov

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Re: Who has regain good balance after surgery to remove AN?
« Reply #11 on: December 23, 2016, 10:48:33 am »
To repeat other members:  this is highly individual.  I was never an athlete and had trouble doing Tree pose for more than 30 seconds in yoga, if that gives you an idea of my athletic level (low). But less than a week after surgery (retro-sigmoid for debulking of 1.7") I was able to walk a couple of blocks with no assistance. I feel that I need to concentrate when it's dark but I'm fine as long as I do. So, the short answer is, I was a bit of a shlub before surgery and slightly more of a shlub now.

AJFunk

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Re: Who has regain good balance after surgery to remove AN?
« Reply #12 on: February 06, 2018, 05:22:56 pm »
Been a while since anyone replied to this post but thought I'd chime in.  I have read SO many posts on this and other sites that were very helpful in making me FEEL prepared however, as several have said, I learned that everyone's experience is highly individualized.  I am going to begin journaling my case here in a new post in the near future as I hope to give back the same way other posters did for me.

As for balance though, let me share briefly my experience with this.  I had a 3cm AN removed via translab approach 11/2017 - about 10 weeks ago.  I had NO balance issues prior to surgery but had sudden hearing loss 5 years prior which led to discovery of a 3cm tumor (and something the MRI didn't show until surgery, a cystic mass attached that ended up being almost the size of a tennis ball).  I am 42 years old, was very athletic all my life and until recently, played high intensity sports multiple times per week and ran regularly.  After surgery, I was SO dizzy and my wife said while I was in ICU I was constantly calling for help because I was "falling" off the bed.  The 5 days I was in the hospital got better each day and I walked out of the hospital on my own two feet.  That's the positive part.

The negative part is that despite weekly vestibular therapy ever since, my balance improved but plateaued.  I definitely cannot run or play sports right now.  On good days I can walk unassisted and drive.  On bad days I sit and watch the world spin and don't dare try to drive, have to shuffle slowly and look directly at the ground in front of me or I fall.  There are still unresolved complications in my case and my doctors are doing all they can to help understand and resolve them.

My biggest point in this brief post for anyone reading is this:  There are no typical cases.  Read the experiences of others and just take them all in with the understanding that there is a WIDE spectrum and you could fall anywhere along that spectrum.  In my opinion with hindsight, I made the mistake of correlating great health, a young age, athletic lifestyle and top quality medical care with perfect healing and no issues and that is not the case for me.  Had I gone into this more skeptical and pessimistic, I'd be doing a lot better with all this emotionally, but because I went into the procedure expecting to bounce back quickly and like so many posters "have no balance issues after 2 weeks" and then didn't, I've slipped into depression and am now battling that.  Your chances are the same as anyone's.  You may bounce back from this and into a completely normal life or you may have to redefine what "normal life" means for you and reevaluate your lifestyle based on you physically can and can't do and try to be grateful the AN didn't kill you and that you made it through the surgery.  At least that's what I'm trying to do.

Trust your doctors, trust your instincts, be prepared for anything.  We'll all get through this.  I very much hope to make another post in weeks/months, hopefully not years that I'm back to playing high level sports but today I was happy to make it up the stairs after walking to my mailbox.

To whomever is reading this, I wish you the very best for a speedy and uneventful recovery.
3 cm x 2.7 cm x 2.7 cm vestibular schwannoma
Translabyrinthine @ UCSD Jacobs Medical Center
Dr. Rick Friedman and Dr. Marc Schwartz 11/16/2017
Facial weakness Dec 17

CHD63

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Re: Who has regain good balance after surgery to remove AN?
« Reply #13 on: February 08, 2018, 07:50:17 am »
Hi AJFunk .....

Thank you for your post. Please do begin a new post journaling your case.  That will reach additional users with valuable information on your experience and great feedback for you.

Just adding my two cents here .....  My AN journey started just 10 years ago this month.  Following my first surgery, I could not walk unassisted for a several weeks, during which time I began intensive vestibular therapy.  I, too, at about the three month mark became very discouraged when I seemed to have reached a plateau in progress.  However, I continued to walk, walk, walk in protected places and soon I realized I was making significant additional progress.  It has been a journey of many plateaus along the way.

A couple of things:  fatigue always makes my balance worse (seems logical  ;D); too much caffeine makes it worse; sometimes it just happens.

Please seek whatever help you might need for the depression because stress can definitely make your balance worse.  Your brain is still adapting/adjusting to vestibular input from only one side and that is a slow process.

Keep walking even when you feel very "off" and hang in there, your balance will continue to improve!

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

Cheryl R

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Re: Who has regain good balance after surgery to remove AN?
« Reply #14 on: February 13, 2018, 01:36:32 pm »
You are still early in your recovery.      Give yourself time and don't overdo to prove you will be normal again.        We know how hard it is to be patient with this.    Keep up with the walking and moving the head around with walking.            Walking in the dark may always bother you.     Our brain adjusts and heals with different levels for all.         It will get better.         Some fatigue may last even longer than the balance.         Keep us posted on how you do.                                              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

 


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