Author Topic: Feeling defeated!  (Read 7193 times)

ewchisek

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Feeling defeated!
« on: April 12, 2013, 05:26:49 pm »
Hi. Well, it's been two months since my AN surgery and two weeks since my nerve graft. I have no more fight in me! I was strong before my surgery...to the best of my ability, mainly for my four young boys, but now, I'm done, I can't do it anymore. No one (at home) understands how much a life can be changed in the matter of an 8 hr surgery!
I woke up to find out my AN, was really a facial neuroma wrapped around the nerve, causing them to cut the nerve. I now have facial paralysis, speech issues, eye issues, a huge scar on my neck, sore/numb feeling ear, etc.....if this isn't the worst thing someone can go thru I don't know what is! I'm beginning to think I would of never had this surgery if I would of known the outcome! I would of taken my chances, even with it pressing on my brainstem!
I can't be the mom I use to be. I can't go back to teaching this year and at this rate idk know if I'll ever be able to. I have a great support at home, but it just isn't helping. Will this feeling of defeat ever go away?

Sheila1977

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Re: Feeling defeated!
« Reply #1 on: April 12, 2013, 07:02:13 pm »
Your post is not surprising.  Around this time post-op for me, I began feeling like nothing would ever get better.  And I don't think friends and family are helpful when this cloud sets in.  It's like not being able to see through a fog, one can only see what is at arms length and not the possibilities that are ahead.  I believe others on the forum have explained that surgery for an AN is traumatic brain injury.  That and your complications are a BIG DEAL.   I sought professional help and did find relief and information about what was happening to me.  So I wanted to encourage you to also seek help.  This surgery and its effects are a major life occurence and all of the symptoms, including emotional ones, should be given professional attention.  Hope this helps, happy to PM about my situation if you want more information.
7mm AN June 2011
Almost doubled in July 2012
Translab Sep 2012 at Kaiser San Diego

Kathleen_Mc

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Re: Feeling defeated!
« Reply #2 on: April 12, 2013, 09:51:23 pm »
I think the depression hit me around 3 weeks post-op from the removal of the AN, self esteem out the window etc. (I had the 7-12 about 3 1/2 months later). You need to be patient, it will get better but healing takes a long time, remember the tumor didn't grow over a matter of months and recovery won't happen that quick either.
My Nero. explained to me as well when someone has brain surgery the neurotransmitters involved in mood will get disrupted so a "chemical" depression may occur and this can straighten out own it's own after a period or one may need antidepressant.
I suffered post traumatic stress disorder from the experience of being on life support etc. and saw a psychiatrist for a brief period, he started anti depressants and they helped. you may want to talk to your doctor about this.
The only suggestion is "hang in there, it will get better"
I am sorry you are having to go through this and yes I agree often our "loved ones" don't understand (try as they may), they think the scar heals and that's the end of that.....NOT. I have to adjust to the "new me" both physically and mentally and this took a great deal of time, try to focus on the positive things going on in your life and be sure to get rest and exercise (light walking)
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Tod

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Re: Feeling defeated!
« Reply #3 on: April 13, 2013, 08:20:54 am »
Hang in there.

In another part of my life I send a daily email to someone I love who is struggling with alcoholism. Going though AA, or Al-Anon, or Ala-Teen (as I did oh so many years ago) we learn to take things one day at a time. When my oldest was nine he tried to kill himself and the next seven years were a bit of a nightmare. I only got through things by living one day at a time. Sometimes it was one hour at a time.

When I was finally conscious enough several days after surgery for people to explain to me what had happened, I was mortified. The understanding of what the docs and nurses and techs had been through on my behalf embarrassed and overwhelmed me. And this was before I had even a glimpse of what my family had been through waiting for 32 hours.

So, I had to do what I could to recover to make all that effort on behalf worthwhile, anything less, would have been at the very least, downright rude.

It was never easy. There were times I felt I had to fight, but those were actually only moments in time. The rest of it has been, over these past three years, one slow slog. Just living each day at a time, and sometimes just an hour at a time, and not having to feel like I have to fight.

I only have to live. One day at a time.

As others have noted, the depression is not unusual. Nor is being exhausted. Nor is the realization that no one at home really understands what it is to be you at this moment in time.

You ask, Will this feeling of defeat ever go away?

Only when you let it. Take care of yourself. Rest, give yourself time to heal. Most importantly, realize that your recovery takes time as you have been through a lot.

My recovery and point of view at eight weeks was much different than it was at 12 weeks. At 24 weeks it was different yet again. And it continues to this day. FSR a year ago was unpleasant and slowed me down a bit. As difficult as recovery is, you can do this and go back to enjoying life the way you did. In fact, there is no reason you cannot enjoy life, you just have to do it in a different way.

Just be easy on yourself and give your recovery time. Take care of yourself.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Cheryl R

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Re: Feeling defeated!
« Reply #4 on: April 13, 2013, 08:37:03 am »
I also had a facial neuroma in 2006.     My surgeon at the same time took some nerve from by my ear and grafted in.    I was told it would take 8 mos plus before started to see improvement and he was right.    I do look ok at rest but do not have a good smile and no movement around my eye.     I can close my eye and do blink.      It was a hard time putting up with my face and all the issues while i had to wait and see how it was going to do in the long term.      I still have some eye issues and use gel in the eye at night and only rarely in the day.    I did not do a gold weight to help the eye has had a previous AN surgery with some short term paralysis and knew good eye care.     I have NF2 so have had more than one surgery.              The wait to see how it will go is hard.        Just know your children are just glad to have their mom with them and taking care of them.         Situtational depression is not uncommon and some medication can be of help if you do see a dr and let them know that life is not going well now.      This is a very emotional time for you and ones family does not always understand how it feels for you.    The nerve graft taking time to work is usual.       Be good to yourself and vent here all you need to as we do understand.        Life is one day at a time has been my motto for a long time.        We are thinking of you and hope it does get better in time.                     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

alabamajane

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Re: Feeling defeated!
« Reply #5 on: April 14, 2013, 07:48:25 pm »
Hi and I am sorry you are feeling so defeated ,, I have been in your shoes exactly,, it has been 18 mos since my surgery and graft,, I know how you are feeling,,, many of us do, believe me,,,, not to diminish your feelings at all but to let you know it WILL get better,, you are not far "out" from either of the surgeries yet,, you MUST give yourself time to heal and try your hardest to overcome your feeling of defeat,, for your boys if not yourself,,, I don't know their ages ,, but do know they love you and need you,,  I so remember those feelings immediately afterward and you can probably find my posts from then and see the anger and frustration of going into the surgery knowing there was a possibility of facial nerve damage,, but not "expecting" it to happen to me,, it is extremely difficult to  accept the changes that have happened to you,,I know, I didn't want to fight to heal either at one point ,, but as my Dr told me and my husband when I left the hospital,,, you MUST go forward with your life and go out to eat, do the things you did before and in your case, you have children that need you,, mine are both in their 20's,,,
As others have said,, it may be helpful to see your Dr and get some antidepressants for awhile,, I took Valiums for a short time afterwards to help get sleep and rest and deal! I am sorry there are no magic words to help you right now,, it is very hard and quite a few of us on here know exactly where you are on this journey,, but it does and will get better with some time , healing and distance and just time for you to accept what has happened in your life,,, PM me if you like and we can talk if it will help,, but know you can vent here all you want,, I did and it seemed to help me at the time,, it is still not easy ALL the time,, but better each day,,,,, we care and are here for you anytime,,, best of luck and take care of yourself and rest and take recovery slowly,, as Tod says,,, one day at a time,,, try not to look too far ahead and things will get better,,,, Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

pjb

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Re: Feeling defeated!
« Reply #6 on: April 15, 2013, 06:32:35 am »
Hi. Well, it's been two months since my AN surgery and two weeks since my nerve graft. I have no more fight in me! I was strong before my surgery...to the best of my ability, mainly for my four young boys, but now, I'm done, I can't do it anymore. No one (at home) understands how much a life can be changed in the matter of an 8 hr surgery!
I woke up to find out my AN, was really a facial neuroma wrapped around the nerve, causing them to cut the nerve. I now have facial paralysis, speech issues, eye issues, a huge scar on my neck, sore/numb feeling ear, etc.....if this isn't the worst thing someone can go thru I don't know what is! I'm beginning to think I would of never had this surgery if I would of known the outcome! I would of taken my chances, even with it pressing on my brainstem!
I can't be the mom I use to be. I can't go back to teaching this year and at this rate idk know if I'll ever be able to. I have a great support at home, but it just isn't helping. Will this feeling of defeat ever go away?

You have been through a lot and yes it is a benign tumor but still has caused a lot of problems there are ways to help with most of it and it is going to take time but I think right now you need to talk to a professional to help you get through this for yourself and your family.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

MDemisay

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Re: Feeling defeated!
« Reply #7 on: April 22, 2013, 03:48:35 pm »
Dear Elizabeth,

I know it seems trite, but hang in there! Maybe you can get a referral to see a specialist dealing with neuropsychiatric issues. There is a link for it under "Psychiatrists in NYC". good luck. I'll be praying for you!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

nftwoed

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Re: Feeling defeated!
« Reply #8 on: May 01, 2013, 02:47:12 pm »
Hi Elizabeth;

   Have you asked a neurosugeon about the 12/7 facial anastomosis?. I know life can be so disheartening at times, but, we must face it's challenges. The goal is life!
   Also, some have had a spring type attachment between eye lids if that is a problem with your facial paralysis.
    Please be of good cheer for both you and your children. If you hadn't had surgery, there's a possibility you wouldn't be with us!