what would you want back ?

[Syl]

You know how it is when you open a package and can never put the contents neatly back in the box? That's how my head feels most of the time--like it was opened and the contents just don't fit in there the way they used to. At times it feels like there's too much space in there. So when I rest my head at times, it feels like the brain doesn't have the cushion it used to. Other times it feels like the brain is too big for the skull. I'd like to have the old package back.

Syl

[yardtick]

Syl,

WOW, I wish I wrote that!!!  You hit the nail on the head......ouch that hurts  

I wish it didn't hurt so much for me to smile or laugh.  I'm grateful I can still smile but it really does hurt more and more these days to do so.  I also wish my energy levels would return.  I do not know if it is the result of the surgery, the facial neuroma, the constant facial pain and headaches, or the medication. 

Anne Marie

P.S.  If anyone finds my sunny disposition......I want it back.  I think that's what I wish for the most.  I'll even pay for the postage!  At the moment I'm waiting for the other shoe to drop!!

[LADavid]

Syl
I echo Anne Marie -- I'm going to use that explanation next time I see my doctor.  That is exactly the feeling.
David

[CROOKEDSMILE]

Anne Marie,
You have already had your surgery right? I can't tell by your post but are you due for another surgery? Your facial nerve is intact right now is that correct? What is a facial neuroma and did they not get it the first time. Sorry for the questions but I never knew your situation.
Angie

[yardtick]

Angie,

I had a translab Sept 2006.  The Dr at the time went in totally unprepared when he found the facial neuroma.  He debulked the tumour.  I did not care for this Dr or the neurosurgeon.  Joining this forum put in in touch with the Dr I am seeing now.  He removed a scar neuroma that developed under my scar this past July.  I will need a nerve graft at some point in time, so that is why I am in the watch and wait category for now.  I have the tumour on the facial nerve instead of the acoustic nerve.

How are you Angie? 

Anne Marie

[CROOKEDSMILE]

Hi Anne Marie,
Just trying to make it through the holidays. I have 18 people staying at my house for 8 days this Christmas. We have family from San Francisco and Mississippi that spend holidays here since we have the room. boy...aren't I lucky. I don't cook but luckily my husband does and enjoys it so we shall see.
hmmmmmmmm.....I'll play along. What would I want back?
Days when all I worried about was what color of nail polish I wanted, days when my only ache was from that nice glass of vino from the night before, waking up feeling refreshed and rested, my happy go lucky personality, my face, smile, blink, etc....my childhood which was a fairy tale...NO worries. Okay...I'll stop. My little guy is wanting rocked so must go. The other day he asked for milk and I said just a minute and he said......"No now or you're fired!" (he's 3)
Angie

[4cm in Pacific Northwest]

Well truthfully I would want it all back.

But hey -  I cannot go back and my daily motto is

"Keep moving forward"

Is the cup half empty or half full? 


Since my AN I have learned to lip read, made the most wonderful ANA buddies, met amazing people in the field or neuroscience… and my learning curve has gone way up.

Before this tumor I never would have a considered a career path into library science. It was the hearing loss, hyperacusis, and facial movement impairment that made me choose from moving from a fine arts high school teacher vocation to the thinking about being in the library vocation. It was buddy "Jeff", of the Château Deaf post, that pointed me to that vocation as he went from fine arts teacher (Band) to librarian. (Such and inspiration of courage he is!)

Unless this experience happened I would never have discovered how much I love working in a library… or reading & researching neuroscience so much. (This brain plasticity stuff is fascinating!)

I have grieved what I lost – yeah- but I cannot go back. The eye weight may help. Baha and cochlear implants can help, plastic surgery too – but hey I cannot go back.

Baby I am moving forward. It is the best way to keep moving on with your life and maintaining a positive  attitude.

I am not necessarily thankful for that big ole tumor and the pain and grief it caused (not just me but my family) - but wow have I had an amazing experience from all of this! And what an awesome bunch of people I connected with- that I otherwise would not have.

Regardless of the loss of: blink, hearing, outward smile and now additional hyperacusis and tinnitus...I am still the same person smiling on the inside. And you know… the ANA folks I am meeting at meetings and here on the ANA- they really make me smile. What awesome characters they are -which shine from the inside out - !

Think of Fiona in the animated movie- Shrek 2. She had the opportunity to go back to her picture perfect princess fairytale self- and she chose to stay as an "ogre" because she was encountering so many more sincere, honest and genuine people who accepted her for the content of her “character�... Not her looks and abilities.

Choosing not to go back and to “keep moving forward�

DHM

P.S. Oh and “Satman Super 8â€?  who started this thread- you ARE one of those special ANA buddies that I SOOH cherish. Keep moving forward buddy. Keep moving forward! signed your “4â€?- the other half…

[wendysig]

Hi DHM,
Very well said.  I do try to look ahead, not back and I think most of us do -- this thread just has me (probably most of us really) waxing notalgically for what we wish we could regain.  For the most part this is a very positive group of people, it just that sometimes we miss what we lost and need to have a little bit of a pity party.  Not entirely a bad thing as long as we don't stay there too long.

Wendy

[oHIo]

I'll be selfish and say all three.  Actually my smile is pretty much back to normal, at least prior to the Botox two weeks ago. 

My eye is the most important right now because it is still partially sewn shut.  I'd just like to be able to see out of the whole thing.  I really miss my hearing.  Had good hearing going in. 

So...#1 eye, #2 hearing. 

[sgerrard]

I like this topic. I will keep score, though it seems like it will be a tie in the end.

Time for an update:

Smiles 8, Hearing 9, Eyes 7, pain or numbness 7

Basically a tie, just like I thought. 

I think DHM captured something in her post. Many of us have lost something physical, and now realize how precious it was, but we have also gained something in our hearts and minds, and found a new way to live our lives. Forward it is.

Steve

[satman]

nice work steve , it is pretty much even.
well we can all hope, xmas is on the way.

[wendysig]

This may seem greedy to some. but I'd like my full sense of balance back too.  Although it has improved greatly, I still lose my balance unexpectedly at times   I would also like not to have wonky head.  This is an issue I sometimes feel, and probably rightly, will never be completey gone.

Wendy

[Cheryl R]

I have not answered this and can't say for sure which just one thing is what I want.  Depends on the day what is the most annoying.            I am a   4 surgery survivor and really lucky to be pretty good for all that I have been thru.          I live a pretty normal life but just have to keep watch on what I do and in some ways wish I didn't have to.     I have forgot what normal feels like since it has now been over  7 years since have even come close to feeling that way.          I guess my latest is balance as we have ice outside now and I don't dare walk on it.              My husband couldn't understand why I was on the go so much to do Xmas shopping and errands while we had dry roads and sidewalks.   
    I am most grateful that I got some hearing back this spring.     That means the most to me!
                                                Cheryl R

[ppearl214]

what would I want back? Honestly?  This is just me and my thoughts... but... truly.... not a thing.  Many here have seen/met me. They know the all-encompassing issues I deal with on a daily basis (physically, etc). I have yet to "mourn" my old body. But, for what has not killed me has made me stronger. So... for me.... I have learned to embrace what I now have lost with my physical (and yes, AN) issues..... I've learned to accept this is the way I am now.... I don't look back..... I take what has now become of my body, put a positive twist to it as best as I can (ie: my involvement with the local Disabled community, etc).... and I forge forward.

Honestly..... what would I want back? Only my bigger bank account before the economic crisis hit.

Be well all... stay strong.... happy holidays to you.
Phyl

[Kaybo]

Phyl~
I TOTALLY agree with you - I certainly don't sit around everyday mourning what I don't have anymore (I think you know this about me!) - but IF I could change one thing back, it would be my smile!!     Most days I don't have time to stop & think about what is "different"!!

Happy Holidays!!!

K