ANA Discussion Forum

Post-Treatment => Balance Issues => Topic started by: tincupal on April 16, 2016, 05:18:06 pm

Title: Who has regain good balance after surgery to remove AN?
Post by: tincupal 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
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: volleymom 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: bethtretrault 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.  :)
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: tincupal 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: Eddie 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: areles 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: Neet 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: Tod 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.

Title: Re: Who has regain good balance after surgery to remove AN?
Post by: Greece Lover 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: dredfern on June 29, 2016, 09:13:08 pm
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
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: sheren on December 23, 2016, 09:26:44 am

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!
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: sharonov 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: AJFunk 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.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: CHD63 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!

Title: Re: Who has regain good balance after surgery to remove AN?
Post by: Cheryl R 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
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: midee on February 14, 2018, 03:42:00 pm
I just had retrosigmoid surgery 12 days ago, Feb. 2 at University Hosp. in Cleveland. I was in watch and wait for abut 5 years and then this past year my tumor more than doubled in size which required GK or surgery. I am 67 years old and elected to have the surgery. These past 5 years prior to my surgery, I did Zumba faithfully until about 1 year ago. I could no longer do the up and down movements or the turning around. I then joined Silver Sneakers (exercise programs for seniors) and began that once a week. Those classes do a lot of balance exercises.
My balance right now is amazing considering surgery. I started my PT on Monday, and the therapist said my balance is above normal for my age and found it hard to believe my vestibular nerve was cut. I feel great and have a few weeks of vestibular therapy to continue. I believe that all my exercising up to my surgery date has helped tremendously. I had my first Dr. appt. yesterday and he advised that my vestibular nerve had long been destroyed these past several years due to the tumor and our brain adjusts and compensates for the damaged nerve.

My surgery went very well, no complications so far and facial nerve in tact. My hearing was already gone before the surgery and I will not get it back. I still have a lot of tinnitus but learning to live with it. I think all my minor balance issues will be gone soon.  I hope this can help someone who is still in watch and wait.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: Dnonnie on February 21, 2018, 10:09:37 pm
I am 5 weeks post operative ! I had a 2.2 right vestibular rumor removed by translabrynth approach . I am still walking with assistance of a cane . I feel very comfortable In the house with unassisted ambulatingbut am wobbly .  This is getting better. Turning my head is really hard,  Much dizziness. I have a lot of wobbly walking. I don’t feel comfortable in public walking alone . I am a nurse and will not be returning to work for awhile. I must say I have had minimal pain, not needing anything stronger than Tylenol for discomfort. I do have the metallic taste in my mouth and the dry mouth issue. Other wise I am trying to be patient, walk and rest . Fatigue is  real and I must take breaks. Just wanted to post to give everyone an idea of my recovery . Thank you all for sharing
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: JD808 on August 10, 2018, 11:18:53 pm
I had Translab on 7/18/18. My tumor was in the IAC which I understand can cause more balance issues pre-surgery. My balance had deteriorated badly before the surgery. Upon opening my eyes post surgery, I was prepared for the world to be spinning. It wasn’t. I was up and walking around just fine the day after surgery. I still do my vestibular exercise as I still have issues at night, but I have found my balance to be much better than before the surgery. My research indicated that if you had great balance pre AN and the AN messed it up pretty badly, you had a good chance of being better off post surgery. In my case, that certainly proved to be true.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: Abetpds on August 24, 2018, 12:06:02 pm
I had translab at UCSD on June 26th and my balance is almost back to normal.  Can drive, walk 4 miles, put on shoes and clothes and do all house hold chores.  Only thing I still fumble with are those ridiculous PT exercises like walking backwards with eyes closed,walking sideways while crossing your legs and shaking your head L-R while walking;standing on a foam cushion and doing different exercises without losing it, Exercises that you normally would not do in normal life.  I still continue doing them tho.  But all in all, My PT was very impressed at all that I could do. My greatest success was that I never was dizzy, other than the first day after surgery. I can only attribute that to the wonderful job that Schwartz and Friedman did in removing that tumor.
Now if only my Baha infection would go away, I'll just have to deal with the occasional headaches.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: jami on August 27, 2018, 04:20:09 pm
New member here.

Had my surgery on 8/12, removal of hearing and vestibular nerves on the right side.

I fall a lot, and have for years. I am the gal in the yoga class that falls for any balance move, no matter how hard she tries. It turns out that, over time, my balance nerves on the right hand side have been swamped by this schwannoma. The balance nerves on the left hand side have been compensating over the past few years.

At the time of surgery, my surgeon shared that the balance outcome was not completely known, it all depended on how damaged the vestibular nerve was.

At 2 weeks past surgery: the outcome is very positive. My balance is already close to what it was 6 months ago....until eyes are closed. Today was the first PT appointment and i realized a lot to do in front of me. I will also stand on the cushion that someone mentioned previousl.

How I prepared: I was aware this was a big risk, and spent time over the past few months getting physically ready for the surgery. I have been doing yoga daily, with a breath and balance focus. Walking 5 miles a day, minimum. My balance was better than it had been in years, but it took an investment of time, every day, to get here.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: notaclone13 on August 27, 2018, 07:07:20 pm
Welcome Jami. Sounds like you are doing very well for being only a couple of weeks post surgery.  It's good to hear your balance is still fairly good, albeit perhaps a little bit weaker than before. I am sure it will be back to pre-surgical level in no time at all or perhaps even better than before.  Please continue to post and let us know how your are doing. If you don't mind, could you relate how large your AN was and where you had your surgery?  It is always interesting to hear the details, particularly when the outcome has been good.

Title: Re: Who has regain good balance after surgery to remove AN?
Post by: jami on September 16, 2018, 04:47:27 pm

A follow up with a few details on my surgery (thanks for asking, notaclone13)

My AN, 2.7 x 2.2 x 2.1 cm, removed 8/12 at UNC Hospital Chapel Hill, NC. (Happens to be near where I live, making it much easier). Dr Ewend (Neurosurgeon) and Dr O’Connell (ENT Surgeon) used the tanslab approach. I did lost auditory and balance nerves on right side. They got ~98% of tumor after 10.5 hours of surgery.

Overall, this forum and the association have been incredibly helpful as I prepared for this and are already a big part of my healing process. I am being patient as I go, we all have good days and bad days, right?

Thanks all for the great support.

Title: Re: Who has regain good balance after surgery to remove AN?
Post by: reg on August 12, 2019, 10:52:29 am
I haven't posted in a bit but I am thirteen years post op for a removal of 2.5 tumor, when they say (its the new normal) believe it I been  dealing with this  unsteadiness for years thinking its gonna get better been through vestibular rehab, walk four to five days per week, and a host of meds, I say that to say this, that everybody is different they heal differently, different meds work for different folk just keep on living and thank GOD for another day.
Title: Re: Who has regain good balance after surgery to remove AN?
Post by: mthorn82 on October 27, 2019, 06:34:06 pm
I had mine removed at 18 around 2001 and I'm 37 now with good balance. There will be times when you will know your not 100% the same person you were before but you could still go out most likely and play baseball, golf, basketball etc after you recovery just stay away from football hockey etc.. you don't want to be getting hit hard all the time a little rough hit from the catcher at home plate on a slide might be ok here and there over the years or a dive for the ball in outfield but long term be safe that's all.