New member to your special club!

[mimoore]

Well hello, my name is Michelle. I guess I am a new member to your special club. Hey I am sure you are all great but I really did'nt want to join your "I have a brain tumour club" but here I am... really I am happy to have found support, information and new friends.

Qucik update: I am 44yrs old, married to my best friend and we have three children 25, 23 and 11 (all girls). I was a hairstylist and now am a teacher, I teach primary children.
I am recovering from surgery on June 4th to remove my AN, left side, 2.5,2.1,2.4. I had my surgery in Toronto, Ontario 14 hours.
Total removal was not possible as tumour was stuck on my facial nerve. I have experienced 95% hearing loss and total facial paraylsis. Apparently my nerve is intact so time will tell. I was kind of prepared for the hearing loss but not at all prepared for the facial paraylsis. I have cried a lot, I am now on a mild anti-depressant and can say I haven't cried in one week. I am such a positive upbeat person and have always been there for everyone, it is so terrible to be in this situation.
Who would have know that your 7th nerve controls so much: besides the obvious (my face is droopy), I have no blink, no tears, my eye does not close (the eye is the most FRUSTRATING part, to date I have spent $500 on my stupid eye), my nasal passage has collapsed (stuffy nose), I have lost taste in 2/3rds of my tongue... this truly is a drag.
If one more person says "Be happy you are alive!" I will kick them!
I have been reading and reading - mostly the facial paraylsis forum, and you guys are great. Tons of information.
Thanks for listening.
Michelle 
I chose the big smile 'cause I know the secret - believe and it will happen.. okay maybe I am a little scared that it won't return. 

[Debbi]

Hi Michelle-

Well, welcome to the club none of us wants to belong to!  So sorry that you have the "qualifications" to be here, but glad you found us.

Reading your email made me smile a bit (but only on one side...).  I can SO relate!  I'm 3 months post and am finally getting a small amount of movement back in my right cheek.  And, I agree with you that the non-blinking, non-tearing eye is absolutely the worst (although I'm not so crazy about the pirate-smile either!  )

Have you looked into Blinkeze eye weight?  I got one a couple of months ago and really wish I had gotten it sooner.  Althoug it takes some practive to get it on right, it makes a huge difference (for me) in terms of keeping my eye moist for much longer periods of time.  I can actually drive my car now without pulling over every 10 minutes to lube my eye!  If you haven't read up on this, here's the website:
http://www.meddev-corp.com/1%20product/Eyelid%20Closure%20Products/External%20Weights.2.htm

I'm sure you will get a bunch of other replies here - meanwhile, hang in there because it really does get better! 

Debbi

I am also a big fan of the Refresh eye lubricants (especially Refresh Celluvisc and Refresh PM) - and I feel that I've tried them ALL at this point! 

[Jim Scott]

Hi, Michelle:

I'll begin with a cliché:  I'm sorry you have a reason to be here but pleased you found us. As you know, we're mostly AN patients, either pre or post surgery and/or radiation.  We understand a lot of what you're experiencing, both physically and emotionally.  AN's are, as I call them, 'a minefield'.  Of course the other cliché I have to use here is that 'every AN patient is different'.  That is a cliché only because it's absolutely true.  Despite many similarities, no one has the same experience, good or bad, and we all heal differently, as you know.   

I'm sorry to learn of your complications and facial paralysis.  That very well may resolve in time.  I'm pleased to learn that the forums have been useful for you.  That is their purpose.  I have no simple answers and won't presume to assure you that everything is fine, because it obviously isn't, at least, for the time being.  I hope and will pray that your issues will improve or disappear. Many will be joining me, I can assure you.  This is site dedicated to support and information.  Please feel free to avail yourself of our member's expertise, experience and compassion whenever you need it.  Thanks for posting. 

Jim

[mimoore]

Thanks Debbie and Jim!
Debbie I just got my Binkeze weight in the mail. I had researched the weight and asked my eye doctor had no idea what it was (not available in Canada). So I asked him for a perscription and ordered one. Had no idea which weight so I ordered a one gram. As it turns out it is not heavy enough and I am having some problems with it... I was so excited and tried all morning then took it off.
I have heavy eyelids (hooded - kind of like asian eyes) and the weight flips when I blink or slides down onto my eyelashes (I am not sure if it is sliding or the skin is hanging- sorry gross I know). Anyway, I am frustrated but am not the type to give up so will try again when I am not so tired. Maybe if you have any tips you could let me know?
Thanks again for your quick responses. I am so happy to have found people in the same situation-it is hard for others to understand although they try.
{{{Big Hug}}}
Michelle 

[Pembo]

Hi MIchelle. Welcome and your story sounds familiar. I was amazed at what facial paralysis involved. My eye was alot of work as well. I'm happy to say 4 years later that it blinks almost all the way and with a punctual plug and Restasis drops it stays moist all day. I'm even wearing contacts again. I tried the Blinkeze but didn't like it.

Kick the "but you're alive" people. I'm sure there is a thread on here somewhere from me about all the dumb things people say to you. I learned to look at them and say Yes it could be worse but this is my reality and I'm not liking it right now. It's your New Normal as we say around here.

Feel free to vent here all you want. We truly do know what you are going through and we can all empathize.

Stay strong.......pm on the way.......

[LADavid]

Hi Michele
I won't repeat what the others have said only to say that you have found a good place.  Maybe I can shed some light on your issues with my own personal experience.

I had my surgery in the beginning of December, 2007.  I had a sticky tumor on the facial nerve.  It got stretched and wasn't happy about it.  I would say that for the first two or three months post, my eye was the most miserable part of the adventure.  The Celluvisc and the moisture chamber were my most treasured possessions.  Sunlight was like sticking a needle in my eye.  I had been seeing an opthamologist for eye care.  We had planned on having an eye weight implanted but by the time insurance got around to approving the surgery, I was getting some closure and my eye was tearing well.  Surgery was cancelled.  I still use Systane regularly after 8 months but it's no where near the issue it was when I was one and two months post-op.

As far as the facial paralyisis, I was told that mine would go away in 2months -- it didn't.  It wasn't until three months that I got a tingle in my cheek -- then I got some movement.  That was the good news.  The bad news was that I eventually developed synkinesis (avoid at all cost).  The point I am making -- I know exactly where you are and how you're feeling and the frustration with the whole thing.  As you read these posts, you will find that most everyone returns to "normal" in less than a year.  I know those aren't the most comforting words but I found that when I had hope I could cope.  And I am not the most patient person in the world  Take a look back through the Facial Nerve and the Eye Issues category.  You'll read a lot of good recovery stories.  I wish you the best and look forward to you writing about the twitches.

Meanwhile, have you been in touch with Anne Marie (Yardtick).  She lives in Toronto -- which is where I'm guessing you may be from.

Best wishes.

David

[calimama]

HI Michelle...

Nice to find more Canadians (i assume you are because you seem to be here!) on the site.

I read your posts, and responses from the fine people on this site. I had my surgery in early june and have pretty much the same issues as you (except i have double vision, and if you think an eye that won't close is bad, try have eyes that don't line up! this is the worst part for me). ANYWAY... i was sort of prepared for temporary paralysis because of the size of tumor and having done a lot of research. I am 7.5 weeks from surgery and still no movement (or change in my nasty double vision) but am otherwise doing great (and i have 17month old baby to deal with!).

I saw an opthamologist yesterday (my third attempt, second doctor) at Toronto Western hospital. She said too early to consider blinkeze and since i have to patch my left eye, not much point. But once this double vision goes (pleeeeeeeeeze) i will certainly being trying to get those (the first opthamologist i mentioned these two had no idea).

Anyway, just wanted to say welcome, sorry, and pass on more best wishes to you as you recover.

Trish

[Pooter]

Welcome to our little club, Michele.  You will undoubtedly find all the encouragement and advice you want!  To speak to people who have been there is priceless.  It's helped me a great deal during my journey (relatively new as you can see by my signature).  We know no bounds!  I'm sorry for the complications that you are experiencing.  We all have our complications after surgery that for the most part clear up after some time, some do not.  I wish nothing but the best for your eventual outcome, as others have said.  Welcome!

Brian

[LADavid]

Opps. Sorry Trish.  I had forgotten that you're in Toronto as well.  Looks like the makings of a club to me.

[Jeanlea]

Michelle,

Welcome to the club, but sorry you had to join.  This is a good place to be if you have to be here though.  I can so relate to your problems.  I'm just further along.  I had my surgery nearly three years.  I began my post surgery time with total facial paralysis.  My nerve was not cut, but it must have been really squashed.  I had my first movement at three months.  Now I have a decent smile although it's not as big as it used to be.  I knew that facial paralysis was a possibility, but I never realized that it included the eye.  I have a close relationship with my opthalmologist.  lol  I have a gold weight, have had my lower eyelid lifted and the corner of my eye has a few stitches in it.  It all helped with closure.  Looking at me you can't tell.  I still need to put in gel or ointment on a daily basis, but I've learned to manage it. 

I agree with you about the "at least you are alive" comment.  In the beginning it really bothered me.  I'd be thinking, "Yes, but I'd rather be alive the way I used to be."  I've modified that thought in my head to, "At least I'm not worse."  When you are having a bad day this is a good place to vent with people who truly understand what you are going through.

I'm also a teacher.  I teacher 9-10 year olds.  Being in the classroom with kids with facial paralysis is good therapy.  They are much more concerned about their own particular problems and don't really pay much attention to your face.  (Although I can still make a good angry face.  lol)

Jean

[Kaybo]

Michelle~
WOW!  Look how many people have already responded - are you feeling the LOVE??  We are here for you - anything goes - you can ask anything and know that there will pretty much be someone out there that can relate!  I had surgery 12 years ago and had major eye issues.  I still have permanent facial paralysis.  I say that, not to frighten you, but to tell you that I have a GREAT life now - it may not be exactly what I had planned, but it is good, none the less.  Check out my blog (address below) and feel free to send me a PM if you would like to talk more!

K

[sgerrard]

Hi Michelle,

Here is my contribution on eye issues: http://www.eyepatchheaven.com/

Okay, maybe you don't need that, but its all I've got. Welcome to the forum. 

Steve

[leapyrtwins]

Geez, the one day I tune in really late and I'm 10th in line to say welcome

The kindness and supportiveness of my fellow forumites never ceases to amaze me.  Great work, guys!

As K asked, Michelle, are you feeling the love?

As you can probably tell by now, we're all glad you found us  

As Brian said you'll find all the encouragement and advice you need here - and as he also said "we know no bounds" - but I'm not always sure that's a good thing  LOL

Jan

[mimoore]

Oh My Gosh!!!
Thanks, I am feelin' the love!!!!
It is so nice to talk to people who really understand the frustration, fear, and can celebrate all of the good things that happen as well.
I have a great husband but I am sure he gets sick of "Honey what do you think I should get a pink patch or black?" "Honey which drops do you think would be better?" or "Look - Look does my lip look any different?"
I have included a picture of me prior to my surgery so you can see I have a huge smile (molars and all) and man do I miss it.
Thanks for being so great - I needed it!!!
Michelle 

[satman]

that great smile reflects a great attitude,i have a feeling you will be happy no matter what,sounds as if you have a great support group at home. at least you are halfway down the road,maybe i missed something,how is your balance ? can you walk or are you on a walker/chair ?
the stuffy nose thing will pass and things will look different everyday [i dont mean physically,but life in general]
 one of the lessons i learned through all this is, i use to take so many things for granted,not anymore !
stay positive ,it really helps. we are here for you