ANA Discussion Forum
General Category => AN Issues => Topic started by: mimoore on July 29, 2008, 02:00:58 pm
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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 ;D
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. :o
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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 (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!
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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
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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 ;D
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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.......
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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
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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
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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
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Opps. Sorry Trish. I had forgotten that you're in Toronto as well. Looks like the makings of a club to me.
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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
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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
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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
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Geez, the one day I tune in really late and I'm 10th in line to say welcome :o
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 ;D
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
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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 ;D
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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
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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 ;D
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got some hearing back,things are already looking up. YOU GO GIRL!
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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
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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
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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!". :o Ow, did someone just kick me? :D Believe me, I'm sick of hearing that (and saying it) too.
Good luck to you and welcome.
Lori
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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 ;D
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Hi Michele,
When you say primary children that you teach, do you mean age or a church class? Just curious?
Hang in there!
Sher
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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 ;)
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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
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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
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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....
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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!
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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!!!!! ;D ;D ;D
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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
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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
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Hey Michelle,
I am so sorry for being late in my arrival here.... sites been much more active with newbies and want to make sure I get to "meet" everyone.... so, allow me to extend my "welcome" to you.... seems like everyone here is ready to help you out along the road....... glad to see you participating here and just remember, we are here to help (as you can see!)
Again, welcome!
Phyl
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HI Michelle,
I had a lot of trouble finding appropriate eye cover here in Canada too. I also tape at night, which is fine, but i hate when i have to open the right eye in the night (i have a 17 month old! who sometimes still wakes) and then i feel like the left eye might pop open under the tape (which it hasn't).
I have double vision (still !?!???) so i wear a patch during the day too, and could only find those nasty, tight black ones that they carry at shoppers, walmart etc. I tried all kinds of places looking for a nice patch and in the end my dad wife sewed beige material over a black one and i use that sometimes (plus a black one with a manually extended elastic).
Do you live in TO? Where did you have your surgery and who with??
I am heading back to work in early Sept, facial paralysis and all...
Trish
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Hi Trish,
I have been using paper tape and eye bandaids at night (I smooth the bandaid down to help keep the eye from popping open). Debbie from the board was talking about Glad Press n Seal and I thought I might try it, the bandaids are getting expensive and painful pulling it off in the morning. I feel like it is stretching my eyelid. The eye regime is getting expensive and where I can cut costs with the same results I am going to try. I tried the Press n Seal last night and it was as really AWESOME. I used the paper tape and then the Press n Seal (I smooth it down and it helps keep my eye closed well) and it sticks well and removes well and you can reapply it again, which would be good for you Trish when you need to get up in the night with your baby.I tried other plastic wrap and it didn't work well for me.
I ordered to beautiful patches off of patch heaven - can't wait till they come. Check it out lots of great funky designs.
I had my surgery at St. Michael's hospital.
Good for you for going back to work - I am feeling very self concious and the eye is such a problem for me. I keep saying I am waiting for the train to come and bring my 7th nerve back... I know I need to get on with my life but man is it hard. My husband and I were invited to go a wedding celebration this Saturday and I told him to go without me. Lots of new people and I am poopy and droppy. Any movement?
Michelle ;D