Will I EVER feel normal again?

[stoneaxe]

I was going on 3.5 years of significant balance problems even after having done considerable balance therapy and thought it would be that way forever. That was the summer of 2007. These days I get compliments on the quality of my surfing (waves not web....  ) Some folks see great benefit of traditional balance therapy...for me it took more.

[Brewers7]

Thanks.  I needed that.

[Anasazi42]

Hi HJY
I see you were 13 weeks post-op back in March and I wonder how things have improved for you since then? I'm now at about 13 weeks post-op. I had retrosigmoid surgery on May 12 to remove a 3 cm AN. Do you still feel disoriented like you described in March? What are you still dealing with and what has improved? Many thanks!

I have a query - to which there probably is no answer - does anyone ever actually feel normal again after surgery? My balance is pretty good but what doesn't seem to be changing is that disorienting way the world 'shakes' up and down or side to side the moment I move 'quickly'  - or should I say 'normally'!?  I'm 13 weeks post and still find it hard to walk quickly, drive, manage shopping centre aisles and especially cooking!! Please tell me you do actually get back to feeling normal again!

[mojwri54]

I have been up and down for three years...has anyone else?

13 November will be 3 years for me also since my operation.  I have my good days and some not as good.  Right now I get tired easy but I know that is because mine started growing back and I had cyberknife radiation for 5 days the first week of August. Some days I go to work and come home eat and hit the bed the last week. 

I am just glad to be alive even with some of the problems, I was told I was lucky that it was found just in time the first time.  I kept telling my doctor there was something serious but he just said it was all in my head (will guess it was but not the way he meant).  Guess what the denist told me it was something more and wrote my doctor to do a CAT scan or MRI, that is how it was found.  Needless to say that is not my main doctor these days. 

I don't know what brothers me the most these days this or my back, which is funny it was alot better about a year or so after the AN operation. 

[wwarr]

Hi HJY,

Wondering how you are doing now with your balance and how you are feeling?  It does take time  to find your new normal so just be patient with yourself.  If you haven't done balance therapy, I would highly suggest it.  Life does get better.  It's an adjustment and I have never felt the same as before surgery but it's okay, I'm glad I'm alive.  Hang in there!

Wendy

[Jeff]

I had 5.AN related surgeries betweem 2002 and 2008, and it has been my experience that improvement spans months and years.

Stoneaxe gives good advice. My daughter was 2 when I had my first surgery, and while exhausting to do things with her, I did as much as I could because I wanted her to have a "normal" dad.

Am I normal? -far from it. I have no hearing and no balance nerves.

As Stoneaxe said, it's the challenges that make things better.

I had catastrophic complications during surgery in 2007 that left me with some motor difficulties. One of the best things for me was to try to keep up with my child.

I am now approaching the 5 year anniversary of that surgery.I work full time (including 2 hours commuting daily). In addition, I have a new reason to keep improving. She is 5 months old and a real blessing.

To all of you who are dealing with the issues caused by ANs, hang in there. You can get better for a long time to come.

Will it be easy? Maybe, maybe not. Will you be better for persevering, YES.

I wish you all the best.

Take care,

Jeff

[Cheryl R]

Congratulations Jeff on a new little one!    I am very happy for you and your family and know thru time how hard it has been for you and how lucky you have been to recover as you have.      I hope your children will not have the NF2 also.            You have been my inspiration that there is life with NF2.            It is always good to hear from you on here!
                                               Cheryl R

[Mei Mei]

Congratulations all  on reaching these milestones!    I was told somewhere somehow that we have to change our definition of normal after an AN.   It is a life changing event.
I'm finding Tai Chi is working wonders for my recovery.
Mei Mei

[HJY]

Hi all! 

Thanks for all your input and updates!  I know some of you asked how things were going now...I’m 11 months post op!  Wow!  Time flies!  By six months I was actually feeling pretty good - we went on a family holiday and I was able to run along the beach, go down caves - tried some rock climbing which was fine on the way up but ended pretty hilariously with me screaming for help unable to get down!!    About June/July I noticed the tinnitus was getting worse and changing and over a few weeks lost about 40dB of my hearing across most frequencies in the AN ear.  At the same time my balance deteriorated.  This sent everything into a bit of a tailspin and my face slowed down its recovery too (at 11mths I am symmetrical at rest, have full eye closure – although it’s still weak if you ‘prise’ it open – a reasonable closed lip smile that looks happy, pleasant and  - I think – quite pretty , my ‘big’ smile is still asymmetrical but I show enough teeth that people who don’t know me don’t seem to bat an eyelid or notice too much).  I had an MRI which showed no tumour regrowth (thank goodness) but no irritation or other cause for the irritation and loss.  They tested for autoimmune diseases - which were all negative.  The PT did tests which showed irritation of the vestibular system - worse than those shown in march.  The final outcome?  They have NO idea - they tried a course of steroids but this did little to help my hearing.  So the outcome is that I’ve had to go back to all my balance exercises from months ago, which is very discouraging, and they have recommended a hearing aid!  The only other information offered was that it could be irritation from the muscle packing that they place in the void after tumour removal.  the only option if that’s the case would be removing it - this would have to be translab hence I would lose my hearing.  There is also a theory that there is a small slip/stub of the vestibular nerve left in that ear which is regenerating.  Hence the irritation (whatever is causing it) is affecting that as well and making my balance deteriorate.
I’m not sure whether others go through similar things.  The Dr who did the surgery said that while there are a few patients who go on to lose preserved hearing, the general picture is very uncommon for people post AN surgery.  He has referred me to a Neurologist to see whether there is anything they can add.

I feel very frustrated at going backwards so badly - especially when I know have a very active crawling baby!  He's go, go, go this one!!  If any of you know others that have had similar experiences I’d be interested to hear!

Take care,
Heather