Author Topic: today is my AN anniversary.  (Read 5723 times)

cate4Him

  • New Member
  • *
  • Posts: 10
today is my AN anniversary.
« on: January 12, 2009, 02:37:02 am »
I guess I am feeling down. I ran out of eye tape last night, sleep was minimal and miserable with my eye open all night. So today, there I was on the anniversary of my surgery stocking up on necessities for the aftermath of my Acoustic Neuroma. I am 9 years post-op and there seems to be no hope for improvement. After my surgery "they " told me that my facial nerve would repair. Daily, I anticipated the return of my face, my smile, my blink, my expression of who I am. Six days, then six weeks… then six months turned into six years…after the first few years I lost hope. That was painful.  Now, it is how it is. I am not angry or depressed. Most of the time I forget my face is paralyzed. I have adjusted emotionally. However, I am single, so…my hopes are diluted to ever finding someone who could find me attractive. Seldom does my face convey my true emotion. I was a very animated person before paralysis. Now I just look deranged. Hey, it can’t steal my joy.  I just know that when I get to Heaven I will be grateful to have had this experience. And I’ll be smiling…really BIG!!!! I am always amazed how sharing feelings brings clarity…it is the product of release. An essential part of going forward. Thanks for listening. cate

saralynn143

  • Hero Member
  • *****
  • Posts: 1822
  • Sarey Sarey Quite Contrary
    • MVD diary
Re: today is my AN anniversary.
« Reply #1 on: January 12, 2009, 06:42:09 am »
Hi Cate, we all understand your feelings. They are perfectly normal. Do you live anywhere near a facial nerve center? I know there aren't a whole lot of them. I am fortunate to live within commuting distance of the one in St. Louis.

There are surgical options. The easiest is to put a weight in your eyelid to help ikeep it closed at night. There are also surgeries to make your appearance more normal.

Hang in there. You seem very centered in your faith.

I have to go rouse my kids now, but I'll write more later. Take care and God bless your day.

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

mimoore

  • Hero Member
  • *****
  • Posts: 736
  • Believe!
Re: today is my AN anniversary.
« Reply #2 on: January 12, 2009, 06:58:29 am »
Big cyber hug for you Cate.
As I read your post I so felt for you. i understand the feelings you are experiencing, i woke up with facial paraylsis and was devasted. I was prepared to lose my hearing but not my face.
I am so glad you found us. Others will chime in that have experienced permanent facial paralysis (mine has stated to improve) and the options that you have, even after this much time.
You seem to have such a great attitude. i admire that.
We are a team and we are here for each other - through good times and bad.
;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

nancyann

  • Hero Member
  • *****
  • Posts: 2249
  • carpe diem
Re: today is my AN anniversary.
« Reply #3 on: January 12, 2009, 02:20:16 pm »
Hi there Cate:  It's nice to meet you.   I have right sided facial paralysis also.  I use an adhesive eye patch every night, it's called NITEYE dry eye moisture chamber - I'm at work now so I don't have the tel. # but if you're interested I can get the # when I get home(they're a bit pricey but worth it).  I also had the T3 procedure (Temporalis Tendon Transfer) - you can see my before/after pictures if you click on Facial Issues, then go to page 8, scroll down about half way to topic Post Temporalis Tendon Transfer, then go to page 2.   I went 1 1/2 years before having the T3 surgery, it's the best thing I ever did. 
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
right facial paralysis
good to go.

Patti

  • Sr. Member
  • ****
  • Posts: 361
Re: today is my AN anniversary.
« Reply #4 on: January 13, 2009, 07:30:49 am »
cate--i am 8 years post-op with all the same issues.  how can you not feel bad about it with the constant eye issues, eating issues, balance issues, hearing issues, etc.?  this is the place where you will get understanding.  i don't contribute often because i am afraid to make the newly diagnosed more nervous.  they should have a site that only old-timers can access and we can all commiserate!  patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

cate4Him

  • New Member
  • *
  • Posts: 10
Re: today is my AN anniversary.
« Reply #5 on: January 14, 2009, 01:54:51 am »
Thank you all so every much for your kindness and “cyber hugs�. I‘ve never heard the term “cyber hug� that’s so cute. And sooo felt! I am not very computer savvy. In fact I can’t figure out how to upload a picture on this site! Anyhow, I have been considering the eye weight…but I have lousy insurance. So that pretty much eliminates a nerve center or T3 surgery as well. I think that’s part of what I have been feeling…trapped in my face. With limited financial ability and (at this point ) limited motivation.... I feel trapped. I’m just tired of the constant hassle with no sign of improvement. And I’m here singing my sad song. I feel guilty. But, somehow I feel like this is okay. I feel safe, free and accepted here. I can’t tell you all how comforting your response has been. I have been all alone through all of this for 8 long years. Tonight I wept as I read the warm words of encouragement you each wrote, It has been a long time since I've allowed myself to feel sad about my face. Thanks again for caring. cate

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: today is my AN anniversary.
« Reply #6 on: January 14, 2009, 07:36:20 am »
Cate~
I would strongly encourage you to look into getting an eye weight.  I waited 7 years b/c no one thought to mention it to me (move in there) but it was one of the BEST things I did!!  I have had the T3 (& I LOVE it), but by far the weight IMPROVED my general eye health (& putting in drops/ointment) the most!  PM me if you would like to chat!

K
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!

Syl

  • Hero Member
  • *****
  • Posts: 765
  • Forgive me. I'm having an AN moment.
Re: today is my AN anniversary.
« Reply #7 on: January 14, 2009, 12:30:19 pm »
Cate:

It breaks my heart to know that 9 years post-op you still have so much pain--emotional pain that is. I'm 7 months post-op and get frustrated trying to put this AN experience behind me, but finding it difficult to do so. I was blessed not to have to deal with facial paralysis, but do have other issues.

How can I put this whole thing behind me when so much that I do seems to revolve around the AN and it's side-effects. My Christmas wish list was all AN-related: the Wii Fit to help my balance, scarves and hats to keep my neck and head warm because the cold of winter has been brutal by giving me nasty headaches. My Christmas gift to me was a hearing aid. Today, I have a Dr. appt to help me deal with the headaches.

I hesitate to talk with friends and family about these issues because I don't want them to run away each time they see me approaching. Most do listen, but I don't want to wear them out. That is why I love this discussion forum. So many people willing to listen and share because they can relate. I can come here at any time of day or night and post or "listen".

So, to you my fellow ANer I send a cyber hug (((((((((((((((((((((((((((((((((Cate)))))))))))))))))))))))))))))))))) with the hope that in time your pain will diminish.

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.

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: today is my AN anniversary.
« Reply #8 on: January 14, 2009, 12:41:14 pm »
Hi Cate-

Another cyber-hug coming your way, from New Jersey.

I am not sure how much the permanent eye weights cost, but the temporary eye weight (Blinkeze) was only about $200 including the doctor's visit.  I found that it made a huge difference.  I also got a punctal plug (also not very expensive) and that also helps a great deal. 

I know this is hard advice to follow - but try not to let your looks overshadow who you are.  We are so much MORE than what is visible on the surface.  Let people see your heart, and see what happens.

all the best,
Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

mimoore

  • Hero Member
  • *****
  • Posts: 736
  • Believe!
Re: today is my AN anniversary.
« Reply #9 on: January 14, 2009, 03:15:25 pm »
I ordered my blink eze directly from the company (Med Dev) and it is a bit cheaper. You do need to know what weight to order. A middle of the road is 1 gram.

Here is some information...sadly it did not work for me but others love it.
http://www.fci-ophthalmics.com/pdfs/blinkeze.pdf

Ordering information:
http://www.meddev-corp.com/1%20product/Eyelid%20Closure%20Products/External%20Weights.2.htm

Michelle ;D
Hey just an after thought, anyone interested in buying mine? PM me.
« Last Edit: January 14, 2009, 03:18:56 pm by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

cate4Him

  • New Member
  • *
  • Posts: 10
Re: today is my AN anniversary.
« Reply #10 on: January 15, 2009, 12:56:48 am »
Today, I am feeling hopeful. A long time customer of mine came into my store. She has intermittently watched me go through this, often advising frustrating tedious exercises. I am impatient…I want the instant fix (what can I say I grew up watching “I dream of Jeanieâ€?) Lori,  is a physical therapist. She works with kids who have brain injuries or limitations. Well, she offered to help me. Probably with a discount and the possibility of some trade at my store. God knew I needed help, so He sent Lori! I am so excited and hopeful. Tomorrow I will make an appointment. You know…I have seldom prayed for my face. I kind of just figured it was my cross to bare. It feels good to allow myself these emotions.  cate

Thanks for your suggestion Michelle, Nancy, and Kaybo I will look into it.
 
Debbi...I'm from Jersey too!!! Thanks for your encouragement.

Syl, My heart breaks that I could have been a discouragement to you...Please know that there is hope. That this is not what defines who we are individually. I just read these posts to my 23 yr old daughter and her comment was...that she never knew how this affected me...that it never occured to her that this had such an emotional impact on me. Life goes on. This can be a paragraph or a chapter. It is a choice of attitude. As for the headaches do you work under flourescent lights? I am going to start a new post concerning flourescent lights or PM me for info.

And to everyone...I will take into consideration all your suggestions and let you know. This is so inspiring.


Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: today is my AN anniversary.
« Reply #11 on: January 20, 2009, 04:29:57 pm »
 You said a mouth full with your comment ... It feels good to allow myself these emotions.

I went through a spell of beating myself up for feeling bad about feeling bad... someone here ( sorry memory
sucks and don't remember who) told me to give myself permission to not be up and smiling for everyone
and to let myself feel down in the dumps sometimes ...just don't hang out there all the time ...geat advice

We need to allow ourselves to acknowledge all our feelings ..even when they are not good feelings ... I was
making myself worse by trying to pretend everything was all good... some friends are right there and will come
out and ask me what's up...how am I feeling  etc etc...others kinda hide because they don't want to reminded
that all things in this life are not guarenteed...had someone tell me  it was hard to talk to me because I proved that
anything could happen to anybody ... so even if I was feeling bad physically or emotionally I had started to smile
and say I was fine ...when I hit my one year anniversary I was depressed and angry and sad ...but with help from
people here and just having a place to vent I am better and take one day at a time



3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

 


anything