Author Topic: Facial Paralysis wrecking marriage......  (Read 17472 times)

Larry

  • Hero Member
  • *****
  • Posts: 1464
  • Scallywags Rule
    • Chronologer of the PBW
Re: Facial Paralysis wrecking marriage......
« Reply #15 on: November 03, 2008, 06:59:26 pm »
My headaches, SSD, Tinnitus and a small amount of balance issues pales into insignificance to the facial paralysis issue.

My empathy and heart felt "hope" goes out to you guys. I am fortunate that my wife does understand most of the time although i try not to complain much coz I am not one for sympathy.

I have always said that the true test of a friend (and i guess this could be expanded to a loved one) is that they will be there for you in troubled times. I have a lot of acquaintances but only a handful of real friends. My wife is supportive and my two daughters (25 and 22) understand but they have their own lives and issues to deal with.

Angie, I hope that you can reconcile. It seems that the issue isn't financial in that you have work lined up, i think your husband is using that as a reason to stress and wants life to be what it was before. Well, for what its worth, i think you both need to see a shrink. My eldest daughter is living with her man and she has a "medical problem". (i won't elaborate on what it is but it is life threatening but can be cured). her man was not coping with her behaviour and we got her to see a shrink and he goes too. he is certainly a lot more understanding of the issue now and my daughter is slowly on the right path.

I'm trying to suggest that you need an independant third party to help you work things out.

all the best from down under

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: Facial Paralysis wrecking marriage......
« Reply #16 on: November 04, 2008, 05:58:25 am »
Cheri said a big and very important word ... acknowledge

I think we know but don't necessarily fully  acknowledge the changes... acknowledging then accepting them
and how they effect everyone around us , especially spouses and children , would be the first big hurdle to
taking care of the problem

I am sorry for your problems but glad you posted it up... have spent a almost sleepless night rolling your post
and those of others over in my mind... I know there are issues with the dynamics of my family but have been
pushing stuff away to hid it from myself as I deal to day to day things like getting everyone fed ,to scout meetings ,
clothe washed etc etc etc and trying to maintain my regular activities minus work I can no longer do and
have kinda just thought things would fix themselfs...ostrich in the sand mode I guess...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Cheryl R

  • Hero Member
  • *****
  • Posts: 1824
Re: Facial Paralysis wrecking marriage......
« Reply #17 on: November 04, 2008, 08:18:08 am »
Thinking over and over over past problems is called ruminating when one has depression.     I have done that well over home issues.  I am not as bad with the anti depressant that finally seems to be a decent one for me.
                                                Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

CROOKEDSMILE

  • Sr. Member
  • ****
  • Posts: 376
Re: Facial Paralysis wrecking marriage......
« Reply #18 on: November 04, 2008, 05:18:28 pm »
Well I must say that all of these posts have been therapeutic not just for me but for my husband as well. Thank you all for your thoughtful words of wisdom. We are currently working out our differences as he declares his undying love for me and the children. I know that it is terribly stressful for us...the ones with the post op complications but is tough on our caretakers/support person. I know that he loves me dearly but it has been so hard especially experiencing a major lifestyle change for a usual social butterfly now turned socially reclusive. He said for me to do whatever it takes to feel good about myself again so on the 11th I go for collagen injections to the deep creases on the left side and collagen to the lips. Not that this will fix things but any little bit helps. Maybe a face lift in 3 years as my facial therapist said to wait that long to let the nerve finish healing. Thanks for your continued prayers...we still need them. Now if we can make it through election night since we are of different party lines. Ugh. (lol)
Angie

saralynn143

  • Hero Member
  • *****
  • Posts: 1822
  • Sarey Sarey Quite Contrary
    • MVD diary
Re: Facial Paralysis wrecking marriage......
« Reply #19 on: November 04, 2008, 07:46:46 pm »
Angie, I also want to let you know that this post helped me find the courage to ask my husband how he is doing with everything that is going on with me. We have a very committed relationship but it is important to keep the lines of communication and it is a topic I haven't wanted to broach.

I'm so very happy to hear that you and your husband have recommitted your relationship. You are so right that this is as hard on our caretakers as it is on us, but they don't get as much support since it is not directly evident.

Take care and God bless.
Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Joef

  • Hero Member
  • *****
  • Posts: 1345
  • ** I rather be Kayak Fishing **
Re: Facial Paralysis wrecking marriage......
« Reply #20 on: November 07, 2008, 04:21:22 pm »
Maybe a face lift in 3 years as my facial therapist said to wait that long to let the nerve finish healing.

I agree... I've most of my facial improvements came at 2 1/2 years... now 3+ years later... I still get a "zap" or pull now and then! ... its like filling a pool with a eye dropper, yea it will get there.. but its a slow process...

so yes, give it a least 3 years...
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Maverell

  • New Member
  • *
  • Posts: 27
    • Acoustic Neuroma and Me
Re: Facial Paralysis wrecking marriage......
« Reply #21 on: November 08, 2008, 03:19:07 am »
CROOKEDSMILE,

Please do not give up. I know what it is like to have a marriage fall apart at the same time as AN surgery - I hate to say it but' been there and got the T shirt ' !!!
Whatever happens, and I sincerely wish you well, life goes on. You might not think so, but it does.

Counselling might help, if you are both willing to try it. But whatever happens do not give up. Read my story at the link below - you are not alone.

Mav




Tamara

  • Sr. Member
  • ****
  • Posts: 282
Re: Facial Paralysis wrecking marriage......
« Reply #22 on: November 09, 2008, 08:13:37 am »
Angie -
  I really don't have much to add that hasn't been said already - just will keep you in my prayers. I do want to share something that I read, though.  Apparently, your husband's business can anticipate being very busy in slow economic times.  The article I read said that people will do home remodeling rather than purchase a new home.  Makes sense to me, and it should be good news for you guys.

Take care,
Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

pearchica

  • Sr. Member
  • ****
  • Posts: 320
  • Hey!
    • Political Chic Chat- an Independent Political Cocktail for Women
Re: Facial Paralysis wrecking marriage......
« Reply #23 on: December 09, 2008, 02:31:53 pm »
Angie- I don't have anything to add other than I will keep you and your family in my thoughts and prayers.  Take care of yourself!  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

Syl

  • Hero Member
  • *****
  • Posts: 765
  • Forgive me. I'm having an AN moment.
Re: Facial Paralysis wrecking marriage......
« Reply #24 on: December 09, 2008, 03:45:44 pm »
Angie,

I hope you can get through this tough time.

Sometimes I think that my issues pale in comparison to those of other AN patients. I don't have the facial paralysis, but I do walk like a drunk, have dizziness/wonky head all the time, and I lost a great deal of my hearing on the AN side, and I must not forget to mention the headaches. I have good days and I have bad days. It's hard to hear people ask if everything is ok now. Not everything is ok and this may be as good as it gets. But, I don't want to depress others by mentioning my issues all the time. This helps me focus on the good--explaining to them how well I really am doing.

I think that it must be hard on my loved ones not being able to fix my AN issues for me. I just try to embrace the good things and count my blessings. This probably doesn't help you much, Angie, but I think sometimes we need to see that we can affect how those around us feel when we are around them. There are so many days when I don't feel the energy to get dressed or ready for work, but I push myself and find that working on my appearance helps me feel better. Once I'm at work, I get involved with my duties there and stop thinking about my wonky head or the tinnitus.

May I suggest that maybe seeing you having such a hard time is stressful for your husband, making him feel incompetent in helping you deal with your AN issues. If maybe you did force youself to get dressed up and ready to go out even--if you stay at home. Maybe seeing you like that your husband's mood will improve. As minimal as this may seem, I do think it could help--even if for just a little while.

Praying that you can get through this.

Syl
« Last Edit: December 09, 2008, 03:47:37 pm by Syl »
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

ernie h

  • New Member
  • *
  • Posts: 41
Re: Facial Paralysis wrecking marriage......
« Reply #25 on: December 11, 2008, 07:07:53 pm »
angie i pray that you can see your way through this.i think the key is communication.my post symptoms are nothing in comparison with yours.thes things touch so many parts of our existance people that haven't been thru it can't understand it.hang in there your in all of our prayers.all the best   ernie.
ernie.r side ana removed aug 07 by dr peter black and doctor quinton gopen.brigham and womens hosp boston mass.

golden

  • New Member
  • *
  • Posts: 21
Re: Facial Paralysis wrecking marriage......
« Reply #26 on: February 08, 2009, 08:55:45 pm »
I was not married but had been in a almost 3 yr relationship with a man whom had asked me to marry him post surgery. Long story short 10 weeks after surgery he called me on the phone and told me he could no longer see me. I was devastated by this. I am sure he could not handle the person (or the way I look) I was post surgery. I have since had to put this behind me and consentrate on myself and my children. It's like I tell my mom. You took your daughter to the hospital on April 27,07 and brought home a stranger living in strangers body. Obviously, he was not the man for me and I know I am better off. He only caused more stress in my life and with him gone I now know I am better off and can focus on my children and myself. Good luck and I hope your husband will consider counseling.
 

Larry

  • Hero Member
  • *****
  • Posts: 1464
  • Scallywags Rule
    • Chronologer of the PBW
Re: Facial Paralysis wrecking marriage......
« Reply #27 on: March 08, 2009, 09:15:13 pm »
Sorry Cin but doesn't sound like your man is the man you want to live with for the rest of your life. In sickness and health right? well, these situations really put the acid test on the partner and you quickly find out how "true blue" they are.

laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Facial Paralysis wrecking marriage......
« Reply #28 on: March 08, 2009, 09:17:43 pm »
I agree 100% with Laz.

Very well said, Laz.

Keep your chins up Cin and Golden.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Alice Rapunzel

  • New Member
  • *
  • Posts: 9
Re: Facial Paralysis wrecking marriage......
« Reply #29 on: April 15, 2009, 12:59:32 pm »
I am new to this list by about 20 minutes. Very brief background just for context on my response. I am 18 months post-surgery from a 16 hour (planned 8 hours) facial nerve neurofibroma removal. While not an acoustic neuroma, the location is close enough in a "horseshoes and handgrenades" fashion.

While the discovery of the facial nerve tumor was recent, I've had facial paralysis Because of the tumor since I was two years old that was always "diagnosed" as either a residual from or a new episode of Bell's Palsy.

Through the years, due to the crooked smile and (one) squinted eye, some folks assumed I'd had a stroke. My response was that if one was given a chance to decide between Looking like you had a stroke or actually Having a stroke which one would you choose?

My favorite was from a boyfriend that told me I had a pirate smile like the girl referenced in Elton John's "Tiny Dancer." My response then was "Oh, you mean my pirate smile?" which always made them wonder if that applied to my personality as well. I thought it went well with my sometimes uncontained wicked wit.

I can only imagine the anguish you're feeling. I've had decades to adjust to the cosmetic appearance of facial paralysis, but it feels like I've had only nanoseconds to adjust to the surgical fallout. And each of those nanoseconds has been an eon long emotionally -- and it's only been my pirate smile and wicked wit that has gotten me through this.

I am overwhelmed and grateful to have found this forum even though the diagnosis is not identical.
Claudia - aka Alice Rapunzel for "wonky head" & spatial "Alice Through the Looking Glass" cognitive issues + preference for cool, dark and quiet rooms (variation on Rapunzel's Tower)
Facial Paralysis since age 2 
Facial Nerve Neurofibroma resection -brainstem/IAC/middle ear  w/auricular graft 2007