Depression

[pejavar]

Hi all,

   How many of you went through a depression phase , asking questions to yourself "Will I ever be ok ?,
Post AN life is hard than I imagined , I cant smile because of bell's palsy, I have SSD because of surgery ,
I always walk as if I am drunk ( because of the balancing issues ) , My eye is much more sensitive than I think
At the end of Day how do i convince myself that I should keep my Chin up..No matter in crying ..I should move on
in life ...."

I keep wondering ... do others think the same or is just me ....


Pejavar
5.5cm AN - Right side
Removed Dec 14th, 2004
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

[jamie]

When I first found out I had a brain mass, I thought I was done for. Not having the MRI report I had no idea what kind of tumor I had and my general practice doctor had no idea either, all I knew was I had a tumor. Driving to pick up my MRI report, all I could think about was how long I had left to spend with my four year old son. I was a bit relieved when I read the MRI report and it said it was most likely a schwannoma, I knew those were benign 99% of the time. But I still really had no idea what the future held in store as far as what treatments I would be a candidate for, etc. But knowing it most likely wasn't a death sentence made me feel alot better. I didn't care if I was bound to a wheelchair and had to be fed through a tube for the rest of my life, as long as I could at least see my boy. I still don't, although luckily that's not a likely scenario with these tumors.

It's hard not to get down and think why did it happen to us, 1 out of 100,000 people, and we beat the odds. Where is that luck at the casino? But the thing to remember is, it's not nearly as bad as some have it. You're alive, and able to be there for loved ones. And try to remain hopeful of new technologies that are emerging all the time, who knows, next month they could have a breakthrough in nerve repair, it is something they are working on so it's not set in stone that you will have these problems the rest of your life.

AxoGen has licensed several patent-pending technologies from the University of Florida. AxoGen’s product development team plans for three product lines that combine the state-of-the-art recovery and processing technology from the allograft-tissue industry with the biochemical mechanism of axon growth and regeneration. This unique technological synergy makes possible the introduction of nerve repair products that improve the outcome of primary nerve repair and are substantially superior to artificial nerve grafts and the nerve-autograft procedures that are the current state-of-the-art techniques for peripheral nerve repair. AxoGen products will offer an integrated approach to peripheral nerve regeneration and will quickly expand and develop the solutions available to patients who suffer peripheral nerve injuries.
http://www.axogeninc.com/about.asp?page_id=4

There is hope on the horizon! 

[Raydean]

Dear Pejavar

Any one of the losses that you mention would be devastating.  It's hard to reconcile the person you were before (and what you were able to do, with who you are now and (what you may, or may not be able to do).  It touches every area of your life and how you view yourself.

I am inspired by you and others like you.  I see your losses and it saddens me.  But I also see a person of strength and uncommon courage.  All of the things that you were  before, are still there now. You are still you!!!  Your value remains.  Because of the complicated AN journey and lessons that you've learned you have much to offer to others.  Your compassion, for you understand difficult times, be it the fear of serious illness, physical losses, emotional losses and loss of perceived value as a person. Inspite of everything, you are here , you're alive.  You are and will remain a positive example for others to follow. You are a work in progress.  

Remember, that's it's ok to cry, that we need to acknowledge  and count the losses, be allowed to grieve and to be angry before we can accept and move on.  It's hard work, working thru these steps, but it's a necessary part of the journey.

Pejavar, Never under estimate your value, or if it's worth the struggle.  You are leading by example..

Hugs
Raydean and Chet  

[stein78]

I have found myself in a bit of a funk lately.  I think it just took a while for everything that I went through to sink in.  Sure I am VERY fortunate to only have to deal with SSD, everything else is pretty much back to normal.  I was at a wedding a few weeks ago, normally I am a very social person, always talking up a storm or telling stories.  My wife asked me what was wrong because I was so quiet.  I told her that I gave up on trying to listen to conversation.  There was so much background noise that it was a struggle to hear what everyone was saying.  It was a big downer for me...  I don't think I have had closer to this whole ordeal, not sure if I ever will.  I am typically an emotional guy, but since surgery I have never cried about what I have been through.  I am always trying to be strong and positive, telling everyone I am doing great.  Sure it's true, I am doing awesome, but everything kinda sucks at the same time...  Ok, I'll stop rambling, not sure I have helped any, but you are not alone.

[wind6]

Pejavar, I am really glad you posted this topic. It seems the hardest thing to do is admit the sadness that I believe most of us feel. I am always afraid to let my wall down and let others know that I am hurting or scared or mad. I want everyone to see me as strong and positive. I have been wondering if there was anywhere I could turn for support with my grief issues. I worry about talking about this part for fear that it will scare our members that still have to face the surgery or radiation and the after affects.
For myself, I wish I had been better prepared for the reality of my life after surgery. I was really angry for a while that I did'nt know it would be really hard at times. I miss the me that was here before my tumor.
Am I grateful to be alive?...absolutely yes...am I going to stay stuck in the negative?...absolutely not...but I am going to allow myself a little time each week to be sad, mad, scared, and angry. Each day I see slow improvement and I can look around me and see others that have harder crosses to bear but, I will honor the truth about my "full" range of emotions in an attempt to heal completely. I just wish I could find someone...anyone... that will listen and understand that depression is also a part of the journey we are all forced to take without telling me to be grateful. Somehow that statement adds guilt and shame to all the other things I feel. So I for one will tell you its okay to feel what you feel and add a gentle reminder that grieving what is lost is normal and that walking through your true feelings will eventually bring you to the happier other side. My heart and prayers are with all of you.  Sherry

[luv2teachsped]

Hi:
    I agree, although we do try to keep upbeat and positive, there is a very big loss.  You not only lose your hearing but you lose a lot in the way of communication.It can be depressing. Because I was also going through a divorce I have been in counseling and am glad I decided to listen to my counselor and stay with for a while.I still have bouts of sadness.  It's difficult not being a part of things any more.  People talk to each other like they always have and you feel left out.  Many times I end up copying notes from another teacher during teacher meetings because I am so lost. I am still finding it hard to advocate for myself.  But we ARE concidered "hearing impaired" and we do have our right to communication just like everyone else.  I hope I haven't been too negative, but you're right Wind6, this part no one understands until you're the one going through it. luv2teachsped

[Jeanlea]

Hi,

I think this is a great topic.  Only here would others be able to understand.  I have had times of depression.  I can completely understand the "having to stay strong" for others.  They want to know that you are still the same person and haven't changed.   I even have people asking me if my hearing will come back, and they are nurses!  Some times I think it would have been better to have skipped the surgery.  I was fine before with only minimal hearing loss. 

It's only been 3 weeks since my surgery so I'm hoping things will improve.

Jean

[Pembo]

My surgery was almost 16 months ago and I still struggle with this. My facial paralysis is still hanging on, I have SSD, and I'm just not the person I was before the surgery. 

You are not alone. How do I deal? One day at a time and some days are worse than others.

[luv2teachsped]

Hi Guys;  Just today I discussed this with my psycologist, and we came to this.  Unfortunately, no one really prepares us for how our life does change.  We all know it will get better, could always be worse, but still hard to deal with.My doctor said I would learn to compensate for the loss of hearing as well as the balance, which I probaly will learn.  But things will never be the same.  I too am glad some one brought this up.  Although I've think I've done pretty well with all this(only since 5/18/05), I still have my moments.Unless you've actually experianced it, you don't know what it is like.  Thanks for everyone's posts! :Dluv2teachsped

[wind6]

I so agree with you all that this is a great topic. I think a very much needed place where everyone knows exactly how each other feels. For me this has helped me more than I can possibly tell you all. I sit here and read and cry for you all and for me. I believe we are all getting better each day but wow how great it feels to be understood.
Jean...a special hug to you. I see how hard you are trying and please know that you inspire others. I for one am very glad you didnt skip surgery.

[prittdgoat]

Its been 9 months my surgery ,  I'm depressed most of the time cause I still can't walk right, I still have bells palsy, half of my mouth is stll numb, I can' use the right side of my body very well, I could go on and on and on!  The doctor saiid he didn't cut the nerve but it was streched and would take lots of time .....Sorry to be such a downer ...

[Karen]

Does anybody take antidepressants?  My family doctor suggested it but I don't want to try them.  I too take it one day at a time.  I had a 3.5 cm AN removed Dec.2003 and have facial paralysis , dry and numb eye and  face ( which bothers me most)  I'm thankful to be alive but just want to feel good again.  It's better than a year ago but I still miss the old me.  Any suggestions for fighting depression?  I'm a 54 year old grandma , wife and mother.  Karen.  Also I would like to talk to the guy who had his facial nerve grafted with the tongue nerve about a year and half a go.  I found him on this website, but can't remember his name.

[luv2teachsped]

Karen: Yes!,Yes!,Yes! I am taking Elavil plus going to counseling and it helps a great deal.  I know there are AN support groups in some areas, too bad there weren't more.  I agree that time does heal.  As with most chronic conditions, there will probaly always be"those times", but its how we learn to deal with them that will get us through.  I have had Fibromyalgia , arthritis and many back surgeries for the past 15 years and always had those periods of depression.  Now that I've had my AN, whose cares about the others?  I take one day at a time, and find what "picks me up".  I know things could always be worse.Thank goodness for everyone here!luv2teach

[Frying2Knights]

Hey all

I remember reading webpages and being terrified pre-surgery.  My surgeon told me to ignore the horror stories, as they were misleading so I tried.  But now I know the truth.  The truth is what people say here.  So maybe we should speak out a bit more.

Depression is a very real problem for AN sufferers post-surgery.  Raydean, wind6 and luv2 are all right - and inspirational.  I look around the AN sites and am humbled at the strength and heroism of my fellow sufferers.  If only I could learn to look at myself in those terms! 

Imagine telling someone that tomorrow they will awake with severely impaired hearing, facial, balance and endless other problems.  Their head will hurt, a lot, constantly.  Sweet dreams now.  They'd never go to sleep!  And yet we do it day after day after day.  What a bunch of bloody heroes!!  Be proud of you.  It may go largely unnoticed and unappreciated but remember this, inside: you truely are a marvel.

Keep going, and don't be hard on yourself.

Best wishes
 

[okiesandy]

Finially a little truth.  I havent't had surgery yet and am fighting with the ins. co to be allowed to go to House for my surgery. I am depressed now because I have lost all lhearing in my left AN ear and also have AIED  which causes fluctuating hearing in my right ear. I have recently changed local Dr. They quote twice as long  in surgery and just fluff off my fear of all that could go wrong. I have had to put many things on hold for the past 6 mo. The balance issues have drastically changed my life.

The new doctor said with a smile on his face that if I had facial problems they would only last 6 to 12 mo. If it still there, there is surgery to make me look more normal. Also if I lost all heaing I could get an implant. Guess he is going to pay for it because my insurance won't and I am sorry the piggy bank doesn't come close. Maybe it is time to step up and start pushing for better treatment and the recognition that this surgery should only be done by the best. Also some pre-op counceling might go a long way. Seems like just any doctor thinks he is capable of doing this surgery and results be hanged. Do I sound bitter? You bet I am.