New member to your special club!

[mimoore]

Thanks Satman!
I thought I lost total hearing but 3 weeks post op I got a tiny (and I mean tiny) bit back -like 5%. I can hear the tv if it is very loud- or if someone screams into the phone. If someone talks to me on that side can't hear a thing. Anyway after surgery I was completely off balance - looked like I drank too much "Two Oceans" wine (hmmmm my favourite, and I have decided that while I am trying to regenerate a nerve I will not drink). Maybe a wee tiny bit once in a while... okay so back to your question... everyday my balance is getting better - I was told the other vestibular nerve on the other side would compensate in time - everything is in time!!!!! grrrrrr last time I checked I had no patience!!! I am sure this is a test!!!!!!
Michelle 

[satman]

got some hearing back,things are already looking up. YOU GO GIRL!

[nancyann]

Hi Michelle:  I can sure empathize with what you're going thru.  I found the Breathe Right strips really do work - I used them every night before I had the T3 surgery.   Also,  I use the Niteye Bubble Bandage nightly to help keep my eye moist - it's a plastic bubble that fits over your eye with adhesive around it - makes a moisture chamber at night & helps prevent cornea problems (14 in a box & it costs $21 - I use 1 for 2 nights - it's expensive but worth it for me).  You can also use syran wrap & tape it all around to make a moisture chamber - much cheaper but I found it to be a PIA.
I am very glad to hear your facial nerve was kept intact.  As others have probably told you, we all have learned to be patient while waiting for the symptoms to diminish.

Best wishes,  & always good thoughts,   Nancy

[Debbi]

Hi Michelle-

Sorry that your Blinkeze is causing frustration.  I had to experiment with a lot of differenct positions on my eyelid to find the one that worked best.  Because I have zero movement up there (and, don't tell anyone, but I am also 52!)  there is some, shall we say "excess" skin on my eyelid.  If the weight is just slightly wrong on my lid, it tends to pull my lid over my eye (not in the desired "blinking" way...), or it will pull my upper lid over, if that makes sense.  I say, keep trying different positions and see if you can get it to work.  Also, I still have to really concentrate to close that eye with the weight.\

Ideally, your opthalmologist will "fit" you for the proper size weight in his/her office.  Mine had an entire set of weights that they stick to you lid to find the one that is just right for you.  It seems like it might be rather difficult to find opthalmologists in Canada who are familiar with this?  If you can find someone who does the surgically implanted Gold Weight eyelid weights, they should be able to help you, though.  The same company makes both the temp and the surgical weights, so the "test" weights that the doctor uses are the same.  I hope this makes sense?  

Trish, I am so surprised that your doc said that it was too soon for the removable weight!  I've read about so many people on the forum who get them wihtin a few weeks of surgery.  And, I must say, that while they don't apparently work for everyone, the weight has been a life-saver (or should I say "eye-saver"?) for me!

Well, enough about Blinkeze!

Michelle, I know what you mean about missing your big smile - I miss mine, too.  The pirate-smile isn't quite as charming, is it?  However, keep smiling anyway and don't lose your sense of humor and great attitude.  It does get better!

Debbi

[lori67]

Hi Michelle!

The first thing I noticed on your post was your picture with that great, big smile!  No wonder you miss it!  I am 18 months post-op and still dealing with the facial paralysis, so I know how you feel.  I certainly hope yours comes back much sooner than that!  You have now learned all you ever really wanted to know about eye drops but were afraid to ask - the biggest thing being - they get expensive!

Your upbeat attitude will be a huge help in your recovery.  After all, "It could be worse!".    Ow, did someone just kick me?    Believe me, I'm sick of hearing that (and saying it) too.

Good luck to you and welcome.
Lori

[mimoore]

Thanks Gang,
Nancy I have been trying to track down those bubble patches and of course no one has heard of them hear in Canada. So I did the next best thing tried to order on line and nope can't find a place to order them. Where do you buy yours?
I have been paper taping and then the bandaid patch over and smooth it until I don't see light. I hate the patch (adds to my off balance issues) so I have been experiementing with lots of stuff and wanted to try the bubble patch.
Keep the tips coming - while I was creeping, before I joined, I read a lot of your posts Nancy and went right out and bought the breath eze strips and I CAN BREATH - thanks to you!!! I also saw your pictures - very nice - must feel good.
Michelle

[sher]

Hi Michele,
When you say primary children that you teach, do you mean age or a church class? Just curious?
Hang in there!
Sher

[mimoore]

I taught kindergarten last year but am qualified to teach k-6.
I went back to school and got my BA at 38 and then went to teacher's college for my B ED.
It was tough but worth it - just hope my paralysis gets better so I can go and apply for jobs - there are no teaching jobs in Ontario. I could teach like this no problem if I had a permanent position. Now I need to go against everyone else for a teaching position and like this I just don't feel confident - does that make sense? It is very competitive here and I am poopy and droopy. 
I pray for full recovery so I can go forth and conquer!!!!!!!!
Michelle 

[nancyann]

Michelle:  The Niteye is made by Medtronic.  the toll free # is:  1-800-874-5797.  1st they'll set up an account # for you, then you call back the next day & place your order.  The product description is Bandage 90301 NITEYE BUBBLE 14PK NS.    They are very helpful & will let you know everything you need to do.

The web site is:  www.MedtronicENT.com

Thanks for the kind words re: my before/after pictures.....it's  been a long road & I'm still on it with the eye issues (ugh)

Always good thoughts,   Nancy

ps:  let them know you're in Canada - there may be another tel.# for you - they'll let you know

[MAlegant]

Hi Michelle,
Welcome.  I lived in Montreal for a long time (I know, it's like another country within Canada) but I have very fond memories.  I am pretty new to this group, just over a week post op and while I don't have facial nerve issues, my trigeminal nerve was seriously insulted and now refuses to come out and play.  This means that the right side of my face has no feeling right now, including my eye.  It blinks but it is very dry and I'm needing to put drops in it.  It also means that I can't feel food in my mouth on that side and that I continuously bit my own lip without knowing it (I look like a prizefighter) and eating is a whole other challenge.  My prognosis is "at six months what you have is what you'll have" but I have now read so many stories where sensation and movement come back after many years that I figure I'll just go with it and see what happens.  Mostly I'm just happy to be here; my tumor was not small.  I have found this forum to be a source of strength and support.  These folks (especially Steve) also make me laugh.  Hang in there, you're among friends.
Marci

[mindyandy]

I like that...our SPECIAL CLUB!!! We are special.....Unfortunately we are all apart of this SPECIAL CLUB.....but I am happy that I am with all the BEST people....

[oHIo]

Michelle,
Welcome to our club! 

I have experienced the same after effects of surgery that you describe.  I recently started getting a small amount of facial movement after complete paralysis.  The eye issue is the worst.  My eye had to be sewn shut due to corneal issues.  I miss my eye, my big smile and breathing out of both sides of my nose   

I think adults have had more of an issue with my facial nerve paralysis than children have.  I work with children and while they might ask what happened to my eye (they never seem to ask what happened to my face...just my eye) once I tell them I had surgery on my eye, but it will get better, they are fine.  Some children have been curious as to whether my eye hurts, but when I tell them no (I am sort of lying because it is driving me crazy) they seem to relax and never say another thing about it.  If only the adults could be so okay with it. 

Use your recovery from your AN surgery as a selling point of your strength and perseverance and how this experience has made you a better teacher.  If I were applying for a job today, given the obvious signs of my facial nerve involvement, I would most likely tell a prospective employer that I had surgery that caused a temporary facial nerve paralysis.  (I wouldn't mention brain tumor because most people associate that with a malignancy.)  I would keep my story brief, but upbeat and positive and mention something about how this has made me more patient, more accepting, and more determined to work in the field I love.  Prospective employers often ask about challenges, goals or accomplishments, and an upbeat story about facial nerve paralysis might even give you the edge.  Good luck!

[mimoore]

Marci - that's how ai found out about my tumour - first I had a full feeling in my ear (hearing still good) - then lost feeling in part of my face, part of my tongue and finally lost sensation in my eye ball. My ENT told me that sensation nerves are not as easy to come back as opposed to movement nerves BUT after my surgery I got feeling back and had total paraylsis. It is different now, I do have feeling but have weird rushing and tingling feelings rom near my ear to my top lip and tongue. I knew if I was lucky enough to have the feeling return it would be different - my tumour was squeezing it.
I thought at first it was my facial nerve waking up but no I had an EMG test and the neuro guy looks and me and say "Sorry nothing" with this flat tone - I thought 'wait what about the tingling?" and he said it was my triigeminal nerve and not my facial nerve - hopefully you will feel weird feelings too and yours will come back..... let me know how things go. I am scheduled for another EMG in October so hopefully I will see some movement prior to that. I wonder if they can test the 5th nerve as well??

Ohio - thanks for the kind words - that was the best advice ever - I have been struggling with what to say and I like the way you said it... time to heal but when I am ready I will go forth and conquer.... thanks again!!!!!

[MAlegant]

Hi Michelle,
I have lots of tingling going on so I hope it means that something is happening.  I'm off from work until September 15 so that gives me some time to see how things resolve.  I visit with the neurotologist on Tuesday and have lots of questions for him.  Apparently I was struck dumb at the neurosurgeon's office yesterday because I don't remember asking much of anything.  Wishing you well.
Marci

[wendysig]

Michelle,
Welcome to the club that no one would like to have to join, but that everyone here will admit is invaluable.  Sorry I am so late in coming to this thread,but I  hope  better late than never.  Having just returned home from the hospital yesterday, I have been trying to catch up on everything and all the newbies who have joined our AN family.  That is what we are a family of people who otherwise would never have come to know each other, but support and care for one another.  I hope you find the support and caring here that I have found here.

Wishing you all the best,
Wendy