needing more strength...

[Kaybee]

I am not sure where to begin except to say that I thought I was making it through my recovery okay.  I have my ups and downs sure.  I have facial paralysis and have not seen any hint of movement in nearly 4 months.  I have had my eye stitched up and just recently got an external weight which does not seem to be doing the job as well as tassorphy as opthamologist noted that my cornea is drier than he would like.  When he told me that yesterday, I really felt like I took 2 steps back and I’m not handling it so well.  My husband has been my rock but I don’t think he knows what to do with me when I break down about my facial paralysis.  And yesterday told me I was exaggerating and that I just need to be more positive.  And that my recovery has  gone so well that I need to focus on the good (back to work, no headaches, improved balance).  I know he’s right but I think my inner strength is drying up.  I keep trying to show everyone I’m the old me but I miss so many things about the old me (smiling, walking my dog which my husband does not want me doing because we’ve had so much snow).  I used to feel so strong after the surgery but recently I just feel weak and dependent.  The old me used to cry quietly but the new me just wails like I’m wounded. 
I have strong faith and a supportive family.  I am inspired and encouraged by so many people on this board.  I don’t post much but read everything.  All of you with longer-term paralysis are so amazing and courageous.  How do you continue to find the strength?    I know I am still fairly early in recovery but I'm past all the initial post-surgical improvement (survivor strength) and too early to do anything about facial paralysis.  I guess I'm just stalling...

Thanks for any advice and encouragement.  I would not know what to do without this forum. 
Kay

[nancyann]

Hi Kaybee:  I know exactly how you feel !  (is that a good thing or bad thing ?!).   You certainly have a right to become upset, my goodness, look at the changes that have happened in your life.  I still have my ups & downs more than 3 1/2 years later.
I try focusing on the 'ups' more.  I was on cloud 9 when I finally did some body surfing in the Atlantic Ocean more than 3 years post op.  I had been afraid because of the movement with the waves, finally got up enough strength (esp. after reading how Bob is paddle surfing!).
I do have times STILL when I cry over my facial issues,  but they are fewer & fewer.  The eye issues are the worst for me.
Constant lubricating, wearing my Nighteye Bubble at night & waking up because the water droplets hit my face & wake me up several times a night....  I could go on & on.    But everyday I'm thankful I can walk, have a great job, am independent with a nice condo...   Cry when you need to, then let it go..
Always good thoughts,  Nancy

[4cm in Pacific Northwest]

KAY,

I never saw movement until 5 months...

I did develop some synkenisis but with therapy now we are seeing even that improve.

Here I am at 2 1/2 years and I am still getting “new” facial movements return.  

My surgeon told me it would take “6 months” for the face to come back. The follow up doctor he assigned me said it could be from “3 months to 3 years” and that my surgeon “tells everyone 6 months”… This follow up doctor also told me I would never be able to ride a bike and turn my head to sight see at the same time without loosing my balance. I told my surgeon about the “3 years” and he said that was “ridiculous!”. (It is frustrating, to the patient, when medical colleagues contradict each other.) Well it turns out that the follow up doctor was dead wrong about the balance recovery but sadly right about the facial nerve recovery. The truth is no one knows the “exact” time frame, as each patient is SOOH different.

I wore the eye weight and used eye “goop” and drops for a year... now I do not need anything for the eye. (However it does not tear with sappy movies or chopping onions -yet). We are all different in recovery and there is no numerical formula.

Facial nerve recovery is slower than watching the paint dry on a rainy day...   slower than pouring molasses in yesterday’s Washington DC snowstorm (ie a cold winters day)   … slower than watching a Pacific Northwest banana slug cross the wet sidewalk in February…

Many of us understand and have been there. It is actually healthy to wail out loud and NOT keep feelings in.

Hang in there… it is still EARLY at 4 months.

Let it come back on its own and do NOT force the placid face muscles into place with your hands as the nerve tissues are as delicate at a butterfly wing and you could cause damage. Do not start any deep message or forced movement, with hands on face, until there are concrete signs of movement… as this can do more damage than good. My synkenisis started around the time I started to sleep on my AN tumor removed side… I am thinking that it MAY be best to NOT sleep on the placid face until muscle tone and nerve regeneration returns.

I am also going to suggest avoid nervous system depressants such as alcohol and take extra vitamin B12. Keep eating well and get lots of exercise to keep the blood circulating and the nerves firing all over the body. (Exercise will also help fight off depression as many of us know that the waiting game CAN be depressing… we have been there)

We are here to get you through this…. even if only at the end of an ANA forum post.

HUGS

DHM

[saralynn143]

Kaybee, if you haven't yet read Jeanlea's post called "Facial Progress," please go to http://anausa.org/forum/index.php?topic=7247.0 and read through it. Her progress began slowly but has continued over a very long period and I think she looks amazing!

I don't think that people who have not experienced facial paralysis can understand the depth of our loss. I know my husband means well, and I'm sure he absolutely means it when he says my facial weakness doesn't bother him. But by golly it still bothers me. It's true that inside we are still the same person, but we have lost part of the outside which is also a part of us. I hope that makes sense.

I hope and pray that you see some movement soon. Mine was at the corner of my nose when I wrinkled it but some folks get eye movement or lip movement first. Whatever it is, that first movement brings a burst of hope with it.

Take care and keep posting.
Sara

[Jim Scott]

Kay ~

You're received some very empathetic suggestions from women who've had a similar experience and I hope you'll absorb it and find some solace and strength from the ladies comments.

I didn't experience facial paralysis so I won't presume to offer any advice.  However, over the past decade, my wife has undergone extensive surgeries for spinal problems and, although she is a real trouper, she has days when she feels a bit despondent and 'needy', a condition that is normally anathema to her.  As her husband, I want to 'fix' her condition but of course, I can't.  She is very active and appears healthy but deals with pain every day, it's just invisible to others - but I know it's there.  I support her by letting her know that I love her and find her attractive and by doing the things that she would have difficulty doing, including house cleaning, washing/drying dishes and other chores.  She does the grocery shopping (without me) and all of the cooking.  I just eat.  We consider that her very necessary contribution to the family and I often thank her for doing it, which, I know, she appreciates hearing.  Because she's a good cook, my compliments are sincere - and she knows that.  She never complains about her discomfort to others, only to me - and then, only occasionally.  I validate her pain and discomfort and try to alleviate her occasional feelings that she's a 'drag' on me.  Never.  To me, she is my rock and my strength.  She saw me through my AN experience with a resoluteness and dedication that I'll never forget.  I intend to do whatever I can to help her as she struggles with a variety of medical issues in her life.  Fortunately, none are life-threatening.  I'm grateful for that.  As a Christian, her strength comes from her deep and abiding faith as well as the support of her many friends, our adult son and me.  We're all glad to offer her that because she deserves no less.  Focusing on the positive aspects of your recovery makes sense - I do that - but you might want to let your husband know that the deficits you're dealing with are hard for you to handle and that his affirmation of your struggles and his appreciation of you, as his wife, are sometimes most welcome.  He may simply not realize this..  Tell him (gently, of course).     

Kay, you don't have to fight to be the 'old' you.  Changes are not all bad, even those caused by medical problems.  You'll very likely regain facial normalcy in time and feel much better about yourself as you adjust to what we often call "the new normal".  I've always maintained that crying (even wailing) is certainly allowed here.  If not here, where?       

I'll end this electronic missive with the reminder that you have friends on these forums that not only empathize with you but want to help and encourage you.  Thanks for asking. 

Jim

[Kaybo]

Kay~
I don't have much more to say than what has already been said...I did all the stuff mentioned and then some and still did not regain ANY movement AND THAT IS OK!!  I say that not to be discouraging but to say that I have been this way for a LONG time now and I just don't have time to sit around and wonder about it.  There is just too much life to live and too many things to do.  Do I like my face like this?  HECK NO!!! but it sure beats the alternative!    IMO, it is certainly OK to vent (especially here because we get it) and be sad, but it is how we handle it for the long haul that defines us as people.  If you would like to chat, send me a PM with your number and I would be more than happy to give you a call.

Keep your chin up!

K   

[moe]

Hi Kay,
Here is (are?)  some cyber hugs and cyber strengths coming your way Cyber hugs too.

I totally empathize and sympathize- my smile WAS a part of me- a great part of me. I'm being patient and persevering (3.5 years post op), but it is still hard, I have to be honest. I am not giving up....

I had my facial nerve cut, re attached during surgery, nerve transposition, and NOW acupuncture!  Seeing improvement in facial tone, and am looking towards the next step to gain symmetry. Upper lip/mouth won't BUDGE.

Your facial function should return on its own (don't remember your specifics). Patience is the word of the year..... Just keep busy with what you are doing, and you'll see it happening. It is hard though, sometimes really hard. There are those cycles you go through with grief/mourning, and I think I am still mourning the loss of my smile.... Yea I know get over it..... (denial, anger, bargaining, depression, acceptance.- had them all except for the acceptance one of course!) Yea for you Kaybo!!!! You've done it!

My little ones are now post college/college/high school, so I have more time to actually dwell on my problems. It is there every day, it doesn't go away.

So it's OK to wail. Just keep going forward is all. Have you spoken to your doctor about antidepressants if you are so inclined? They help tremendously.

Hang in there...
Maureen

[Kaybee]

I have taken these responses to heart and am humbled that all of you would take the time to respond.  It was just the encouragement I needed.  I don't need to always find the strength from within.  Sometimes it will come from outside.  And hopefully that is enough to replenish me!  Thank you for making me feel comfortable to wail here.  My husband has been a amazing partner, as Jim said a resoluteness and dedication I will never forget.  I know it must hurt him to see me despondent and there is nothing he can do.  He has an optimism that I wish I could duplicate.  But he is so forward thinking that sometimes I just need him to acknowledge that I'm hurting now.  Fortunately he is usually able to pick me up when I'm wallowing in my own pity.  But this week, he wasn't enough.  And I looked at him and thought "Be more positive?  Easy for you to say...you're not going through thiis."  And that is not fair.  But I needed to get some affirmation and encouragement from those whose lives have been affected by this tumor, who truly understand my feelings.  My husband, friends, and family say many of the things you did but hearing them from you yesterday was what I needed.  So I thank you for your heartfelt responses.  I am truly touched.  Hugs to all of you. 

[Kaybo]

Kay~
Here's hoping that today is a better day for you!     Maybe you'll have some sunshine your way...we've gone DAYS without any sun and still have mountains of snow piled up everywhere.  Sun always makes things better for me!

K   

[Kaybee]

Thanks Kaybo!  I maintain that February is the cruelest month...well at least in the Midwest!  The snow looks beautiful but I want to walk on my street again and feel some sunshine.  Guess I need to get that amazing husband of mine to give me a trip south for Valentine's Day.   

[lori67]

Kaybee -

You may have to go WAY south to get to some warm weather and sunshine!  Seems like it's cold and snowy everywhere lately!

Glad you're feeling better today.    Everyone needs a little encouragement sometimes.   

Lori

[pattibobatti]

Hi Sweetie,

I had surgery 4 years ago and it was not until 9 months until there was the SLIGHTEST twinge. I think I had just accomplished the most wonderful thing in life. Slowly, things came back.  I pray that it happens for you. Take good care of yourself and maybe you just have to wait.  God bless you.

Patti

[martyc]

Hi there,
I'm so glad you shared your heart.  Bummer that they had to sew up your eye.  I still use my external eye weight, nearly 2 years later, but haven't had to have surgery on my eye yet.  I continue to have more progress with my paralysis, so I know that I'm not done healing.  I would trust that for you as well.  I've come to see that this paralysis has been for my benefit and for God's glory.  Had I come home from brain surgery looking as I used to, I would not have given myself the time to recover, or receive so much help from so many people.  That has been such a learning curve for me.  We all have our different journey's and challenges, and I'd say you are right in the thick of yours for sure.  I hit such a wall of depression that I felt barraged by hopelessness.  Getting treatment for that was so pivotal for me as well.  We don't have to carry our hope by ourselves, but let many others carry it for us and help us until we feel it.
Praying for hope to fill your heart tonight.
Keep us posted on your face, and on your heart!
Marty
ps I wish I'd bought stock in Celluvisc!  I use it all day long, and find it cheapest at Target.  I use ointment at night and haven't had any cornea problems, yet am getting lacrimal plugs next week to keep the drops in a little longer.  Just some practical thoughts.

[gman100]

I can definitely relate and I know it sucks. I always wanted to be the tough guy after my surgery. I was always very optimistic and tried to set the example that one should try to succeed even when something horrible happens. People would always comment on how hard I was trying and what not.

However, that didn't last forever. After about 3 months everything that happened really started soaking in. I was always really fit and I just assumed everything would sort itself out. I thought everything would return to normal.  I don't think a return to normal will ever happen, it's a new normal. As time passes I come to accept the losses more and more and learn to live with them. My girlfriend has really been great and supportive, so that helps.

It's just important, at least it was for me, to know that people were really going through the exact same things. At first people made me feel like I shouldn't have a large sense of loss or that I wasn't getting over things soon enough. They couldn't have been further from reality. These things take time and it's perfectly normal to feel like hell sometimes. It helped me to realize what was important in life and I hope you get something positive out of it too. It also made me realize that I didn't always have to be the tough guy, it was OK to reach out sometimes.

[Kaybee]

Thanks for all these wonderful replies.  We had a rather nice day yesterday considering it's Feb in Indiana.  I work for a large company in Indy and had to walk across our campus for a meeting.  I haven't done this since my surgery mainly because I have to cross some busy streets and there has been so much snow and ice on the ground since my return to work.  Wallking back solo was huge for me seeing as I have not crossed a street without the aid of someone's arm in months (balance was wayyyyy bad in the first couple of monthis).  But the sun felt so good and the air so fresh that I did not want to get on our stinky shuttle bus. 

Wow, was I glad I did.  Prior to surgery I walked alone alot or with my dog.  And I had forgotten how good that is for your mind, body, and soul.  Anyway, I had a thought on my way back that I wanted to share.  Because it is helping me stay full of hope.  I have been looking at my recovery as a journey back to my former self.  And if i don't ever get back to my old self, I would be less of the person I once was.  I have to change that mindset.  This journey back will take me to places where I am more of what I once was.  So rather than try to find everything I have "lost"  I need to begin to "gain" what I did not have before.

Oh my, I'm only on my first cup of coffee so I hope that makes sense and is not overly sappy or sentimental!  You know sometimes...things make a lot more sense in your head.  But I intend to be more than what I was and use this journey to grow.  My husband who is a native of Colombia has said that if I lose my job due to corp downsizing this year, we can pack up and buy a farm in Armenia, Colombia in the heart of the coffee region, entertain tourists, and grow mangos.  And that is just about the happiest thought a girl from Indiana can have on a cold Feb morning!

I count my blessings a lot...and this forum always makes the list.  Take good care!