Author Topic: Sadness  (Read 5101 times)

lilakess

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Sadness
« on: March 28, 2008, 09:32:59 pm »
Hi.  I'm new to the site, but almost 5 years post-op.  I've been reading a lot of the postings and it makes me realize how, relatively lucky I have been in my experience.  I so admire all the positive postings, when I can only imagine (and know from some experience) how hard this can be.

My history (in brief):  I was 33 when they discovered I had a 4 cm meningioma that was in the base crainal area.  They thought they might be able to save my hearing, but in fact the tumor and grown into the bone.  I woke up with total PF on my left side, and deaf in that ear.  But, I had a brilliant surgeon in NYC, Dr. Sen.  Two and a half years later, I was married and pregnant and developed a spinal fluid leak and after my daughter was born, I had to have a surgery to seal it.  I went to Dr. Brackmann, also a master in his craft.  By now, my face was much improved.  Dr. Brackmann, rating me on his own scale, said I was a three, but on the two side (my eyebrow doesn't move properly and so they can never say I'm actually a two).  At rest, I look fine, but it is my smile (and I had a big pretty smile) that really is gone. I have a small, closed mouth smile.  I've been to see, both Jackie Deals in Wisconsin and Karen (in Holland) who both taught me various exercises, which I think helped.  I was continuing to do them until six month ago when my husband left me (another story).

But I definitely would encourage everyone to do the physically retraining.  It takes in the area of 3 years, every day.  So it's a serious commitment, but I believe, the muscles can be somewhat retrained.  Also, the doctors all say whatever you have back at the end of the first year is all you'll get.  But Jackie says, that most people get the most recovery between years two and three, which was true for me.  I'm hoping that even more can happen over time.  I think the people who snap back get it in that first year or two, but healing continues.

I have been fortunate, in that my eye came back after six months and I no longer need drops, my teeth have been fine until a recent cavity.  I have not headaches, balance problems, etc.  I had a really excellent surgeon.  But I miss my old face.  I miss being able to smile broadly at people and communicate that joy.  Everyone says, I look "fine" but it's so painful to lose such a integral way of relating to the world.  And the thought of having to find a new partner like this, seems impossible.  I need to form a new identity around being a person with a slightly weird face and I'm guess I'm just mourning the loss of what I had.  I'd love to find a support group near me (I'm in the SF bay area) or even just a few people out here who want to get together.  I know I shouldn't complain.  When they caught the tumor they gave me two good years left to live, if I did nothing.  And now I have the most beautiful, healthy daughter and I, myself am healthy.  I just miss being pretty, having control over that side of my face, feeling normal and happy to attract attention.  I know it sounds petty and it is petty, but I am trying to let go and move and be grateful.  I'm sure the fact that I am now alone, jobless and left to fend for myself doesn't help.  I feel it will be harder for me to get jobs looking like this, but maybe I'm just paranoid.

I'd love to talk with a few people.  It's been hard for met to connect so far, because I have been so sad about this, but it's finally time for me to shake myself out of denial, stop feeling sorry for myself, mourn and move on.  When I read about all the problems people are having, I know I got so lucky.

I also want to encourage people to do the exercises and give it time.  The medical community knows almost nothing about how nerves work. They are just throwing out their best guesses.  I recently read an article about a stoke victim whose arm had been paralyzed for 20 years.  They built a contraption to go around the arm and sense what nerve signal there way (or what should have been) and robotically move the arm the way it should be when the brian meant to be moving it.  After about six weeks of three one hour sessions, people were getting up to 20% movement back!  Who knows what they will be able to figure out.  Just don't do too much damage, if you can help it. 

Best wishes to all those who are suffering.

lila

lori67

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Re: Sadness
« Reply #1 on: March 28, 2008, 10:19:14 pm »
Lila -

I'm so glad you found the site.  Sounds like you've had a lot going on in your life.  You'll find plenty of people here to talk to - even if we can't do it in person - Nashville is a little far from SF!!  :D

Don't think you're being petty about wanting your smile back.  I am pretty sure all of us who have to deal with the facial issues wish for the same thing every morning when we get out of bed, and get frustrated about it - and many times, even mad when we get stared at or treated like there's something wrong with us.  One time when I was at my eye surgeons office I was having a bad day and I know he could tell.  He told me that anyone who has had this surgery and came through okay should pat themselves on the back because it's a big deal.  He said he could understand how hard it must be - if you had a horrible scar or something on any other part of your body, you could cover it up - but your face is what we show the world, so if it's not working quite right, we have every right to feel bad about it.

I had my surgery 13 months ago.  At about 8 months, I got some slight movement back in my cheek.  My mouth doesn't droop as much as it used to, but I still can only smile on the good half.  It drives me crazy too, because I was always the kind of person who'd smile at anyone and now I feel like people think I'm either ignoring them or I'm just constantly in a bad mood - which I'm not!!  When I mentioned it to my husband, he said that people can tell I was smiling because they could see it in my eyes.  I'm sure your smile comes through also.  And I'm willing to bet, if you were pretty before - you still are now!

Sometimes it just takes going through the mourning process completely before you can move on and feel like yourself again.  I know I didn't start to feel better until I finally admitted that I was truly mad as heck about losing my hearing and control of half of my face.  I think before that I hated to admit it because I knew how fortunate I was to be alive and well and felt guilty feeling bad.  But I did feel bad.

I hope you are able to shake the sadness - you deserve to be happy and so does your daughter.  I also survived a divorce (a horrible one) and I know my kids were what got me through it.(that and listening to Jimmy Buffett - hard to be sad when you listen to his music!)  It does get better, but like any wound, unfortunately, it takes time.

Thank you for sharing the info about the facial exercises too.  It will motivate me to actually do them every day - which I don't always do... :-[

Take care!  I know you'll find some good friends here - I know I sure did!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

sgerrard

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Re: Sadness
« Reply #2 on: March 28, 2008, 11:34:38 pm »
Hi Lila,

You will have to ask Kaybo what her secret is; she has had paralysis for 12 years now, and seems to be bubbly and full of good spirits.

There is nothing petty about concern for your face. Our awareness of faces is an amazing thing, and we are all remarkably capable of recognizing faces at impossible distances, in impossible circumstances, and of reading every nuance of expression in them from any angle.

The good news is that it is surprisingly easy to get past distortions of the face. When I first met an ANer in person with facial palsy, I thought "wow, that doesn't look so good." Within half an hour, I found I had tuned out the distortion, and was viewing and reading her face like a normal face, and completing ignoring the palsy. While it doesn't make a great first impression, you can quickly get to the second and third ones, and most people can tell right away when you are smiling, laughing, being serious, etc.

I  think you will find that while there will be some simpletons out there that think you look funny, a great many people will see right past that, and see you for who you really are. If you walk into job interviews with a "it's not a problem for me, is it one for you?" kind of attitude, people will take you and your skills as seriously as anyone else's. Unless it's a modeling job.  :D

I'm surprised there isn't an ANA group in SF somewhere - maybe you can start one. You just have to start getting used to your "new normal." It's not so bad, it's just different. You'll find a way through.

Steve


8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

yardtick

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Re: Sadness
« Reply #3 on: March 29, 2008, 09:31:10 am »
Lila,

Lori and Steve are so supportive.  I have a facial neuroma, watching and waiting for a nerve graft.  I am very fearful of the recovery.  Like you and Lori I have a very full smile.  I'm told repeatedly I do not look my age.  I am blessed with great skin and most days a sunny disposition, which helps to make me look more youthful.  I worry about how my husband, sons and friends will look at me after I have the nerve graft.  I worry about how I will handle looking at myself in the mirror.  I understand your sadness.  At times I feel like I am mourning what is yet to come.  I've always looked at life through rose coloured glasses, but the last two years have changed that.

I am on antidepressants.  They help.  I am blessed to have a wonderful husband and four great sons.  My 18 year old son lost one of his best friends a week ago today to cancer.  He was there when she past.  Amanda had an amazing journey on this earth.  She touched so many.  The week before her passing she was in Montreal for March Break.  She knew she didn't have much time, she was in pain, but she went and had a wonderful time.  She fought cancer as a baby of 15 months and than as a teenager at 15 years and four months.  This battle lasted two years and two months.  She was an only child.  Her parents are amazing people.  I look at her life and I look at mine and I know some how I will manage.  I think Steve is right "you'll find a way through"

I wish you peace of mind and peace of heart.
Anne Marie

P.S.  Enjoy your beautiful daughter!
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

nancyann

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Re: Sadness
« Reply #4 on: March 29, 2008, 11:38:34 am »
Hi lila:  I'm so glad you found us here.    I wouldn't have gotten thru my facial paralysis without the great support of people on this forum.

I understand your feelings - you have every right to feel how you do & no, it is not petty.    I have Brackmann 6, total paralysis.
At 1st I had a 'euphoric' phase,  just happy to be alive.    Then the reality started sinking in.  I was angry, very sad, trying to deal
with this 'mess' - eye lubricants, dry mouth, no taste, etc, etc....    I did the best I could, working, people staring;   then I found out
about the Temporalis Tendon Transfer (T3) surgery at Johns Hopkins, & after 1 1/2 years I feel like I got my life back.  My face is still totally paralyzed, right side, but this
surgery took away the severe droop. (it's mainly for those with total facial paralysis & no chance for recovery).

The best part (& there is one) about this whole journey, for me,  is it has changed my 'mindset' for the better.  I believe I'm better off
now, with some lingering facial issues to deal with, than before this all happened.   I had this 'awakening' only recently.
I hope you too will find the inner peace you deserve so much.

Always good thoughts,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

pearchica

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Re: Sadness
« Reply #5 on: April 02, 2008, 12:05:21 pm »
Lila and gang:

I admire you all so much.  You all are tough, strong and determined.  I don't think it is petty to want facial expression and to mourn when it is lost.  I'm in the bay area so let me know when you want to get together for lunch or something.  Take care- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

pattibobatti

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Re: Sadness
« Reply #6 on: April 20, 2008, 07:47:32 pm »
Wow, to all you girls,

There is much help when is comes to looking better after facial paralysis.  I found Dr. Patrick Byrne in Baltimore 2 years ago.  He did alot of surgery on me and I am so much better off.  I chose him  because he is one of the best.  I  flew to Baltimore to have him help me because of he was so well recommended.  I am posting this because there is plenty of hope with all of this......  I just hope  you all know that you have options. 


Patti
17 mm AN removed 1-16-06
  retrosigmoid
  paralysis, cornea transplant,avascular necrosis

   'Are we having fun yet?'

cinnamon

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Re: Sadness
« Reply #7 on: April 24, 2008, 07:37:16 am »
Gosh Lila,

   Thank you for everything you have shared. It has truly been what I have been feeling inside but my husband just does not understand. Of course, we are thankful that we are alive! The fact is we can't hide our face. I have been seeing a facial therapist now for a year and have seen vast improvement but I still keep complaining because I want my full great big smile back. It is true when they say you don't know what you've got until it's gone. I too have been mourning and well recently had to interview for a new job and it was the hardest thing I have ever had to do because my confidence level was so low. I feel it was harder than walking into the hospital to have my surgery. Crazy I know, but your face says so much about you. I am really trying to get a handle of the new me but I think as with everything it takes time. I had my surgery 1 year and 9 months ago. I am still nervous about my job because I start next week and will be around brand new people that don't know me. I think to myself how will they react. I have been trying to prepare myself, trying to surround myself with positive people and remember that I am pretty no matter what. Easy to type but really hard to truly believe. We are all with you in this time of your sadness. Take a nice long drive with the windows down and turn up the radio. I did that yesterday and it was the greatest feeling ever. I felt so free. Oh, and I don't like loud music!
2.0 cm tumor removed suboccipital on 07-20-06
Left side facial paralysis and deaf ear. Just now researching hearing aid after 6 years!

Kaybo

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Re: Sadness
« Reply #8 on: April 24, 2008, 11:35:45 am »
Lila~
I would LOVE to talk to you -- I am not in your area, but I do have unlimited long distance &/or a webcam (even though I don't know how to use it very well - I can learn)!!  PM me your phone number if you want!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

4cm in Pacific Northwest

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Re: Sadness
« Reply #9 on: April 28, 2008, 11:37:22 am »
Lila,

In May I hope to get an appointment with Jackie Diels plus also fly to Stanford for my follow up MRI before the first week of June (today I plan to make calls, bookings etc)

If you can transport yourself to the Stanford campus (where I hope to be staying) I would love to connect with you. The others who have had treatment in ‘the bay area’ have successfully introduced me to Peet’s coffee… to which I understand in the Bay area there is an abundance of. MMMM :)

As far as what you are describing with your face -we sound identical. When I try to move my eyebrow – nada – however this dimple comes in and out of my chin. In the synkinesis it appear “the wires� to the bottom lip and chin and the ones to the eyebrow and eye area have crossed and grown down each others path…

Sadly we live in a society with too much emphasis on appearances. Once you get to know people it is their character that really shines and that is what is important. No doubt in your new workplace it is your character that will shine… and that is much more valued.

There are 2 videos I know of that really point out how we dwell too much on appearances and superficiality in society. I personally, since surgery, have quickly realized who is my life is really of beautiful and amazing in “character� – and who are simply very superficial and have focused way too much on their appearances and that of other’s appearances (i.e. are SOOOH shallow).

#1

SHREK 2 (#1 & #3 did not really impress me but #2 did and it was the lightheartedness I needed to laugh with - as I identified with Fiona)


#2
And this one
http://www.youtube.com/watch?v=iYhCn0jf46U

(Ignore the parody versions that pop on the sideline- these are only just mean and shallow as the people who made them.)

In raising my girls in this ever so “plastic society� I constantly focus with them that “character� is far more valued than appearances.

Here on the forum there is much popcorn passed around….

I hope the 1st video I recommend lightens you heart. And the 2nd one helps you realize that we do NOT need a face mask- we CAN go out in this world as we are… and focus on our character. (Note the model does not have a broad smile… symmetrical or asymmetrical … in fact not even in her eyes is she really smiling.)


Hopefully as time progresses you will be comfortable with whom you are and you will be surrounded by people who really value you and your character… people who could care less about superficial appearances.

This website (I am not promoting a product here just this is the only link I know to the video. Scroll down to the video)

http://www.rocketxl.com/dsef/assets.htm#videos

… has the last lines in the video stating,

              “Talk to your daughter before the beauty industry doesâ€?

There are wonderful people here on this forum to which I hope you find supportive -as I have done. They don’t care about your appearances- in fact some come here in their waking hours in P.J.’S & sleepless. It is what you have to say from the heart that really counts.

Cheers,

Daisy Head Mazy (formerly “4�)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!