Question regarding our fears

[Raydean]

Going into this we all have fears.  Fear isn't a bad thing, it helps us or motivates us into researching various treatments and making better, more informed choices.  Yet certain fears remain, which may be different for each of us.  My worst fear was being left in a vetgetable type state, or being unable to walk. Odd fears but a real possibility for my AN journey.  I had concerns regarding facial paralysis, but i knew going in that this would be a problem.
I also had concerns regarding how those closest to me would react.  (My wife set me straight real quick on that one)  In the end the things that I feared the most didn't happen. 

This got me thinking, others must of had fears too.  So my question is

What were your worst fears going into this?  (You know the ones that woke you up at 2:00 am)

Afterwards did your fears become reality, or did you worry for nothing.




Best to all
Chet

[FlyersFan68]

My fears were ..."Why Me" "What's Next" "AM I Defective" "NF2 (mostly because I have kids)" Also, I had moments when I was roominating..."Did I Choose The Right Surgeon" - "What If I Did This Or What If I Did That" ...All the things positive people avoid! Mindset & Acceptance is Everything In This Journey! Fifty Percent of my grief was finding this tumor. The rest just came with the territory. I am very much past ALL of this mainly because we cannot control many things. I had a good outcome maybe because my tumor was smaller or maybe it was luck?? My wife and children had a positive impact from the start. My wife said long ago that she wishes it was her that had the tumor and not me. She believes she could have handled it better emotionally. Oh Well What Will Be Will Be..So Be It! The whole thing taught me a lesson and I live every day to the fullest. AN seems to cast a shadow but if you don't look back or look the other way you will not see the shadow anymore!

[matti]

I had surgery within 7 days of my AN diagnosis. I literally had no time to think about what was facing me, as unfortunetly I had no research or info to go on, other than what my surgeons were telling me and that was basically the surgical proceedure itself, and nothing more. So at that point, my biggest fear was will I survive the surgery.

After surgery my fears turned to my facial paralysis and the loss of my hearing and how was I going to get back the life I had before. I wasn't prepared for either of these complications and had no one to reference with. I created so much anxiety, doubt and fear within myself, but in reality it was not as bad as I had imagined it to be, once I stopped fighting it and accepted my new self. And a darn good self at that!!! 

matti

[Captain Deb]

My biggest fear going into surgery was A. Facial nerve paralysis (which my ENT said was a very real possibility)  B. Ending up with a permanent headache (Which my ENT said was a very real possibility) C. Losing my hearing in that ear (ditto). Not necessarily in that order--they took turns being the most frightening. Well, I ended up with 2 out of 3.  I was totally unprapared for the vestibular disorder--that one caught me really off guard.

My biggest anxiety was "Did I make the right choice?" I still have a problem with that one sometimes.

The headache thing has gotten better- three years later. No hearing in AN ear--facial nerve completely unfazed except for a funny rash that went away about the same time as my headaches started to ease up--at about 2 1/2 years.

Capt Deb

[Battyp]

My biggest fear was surviving the surgery and having my affairs in order since I'm a single parent to a teenager.  His dad had died from brain cancer.  I reached the point right before surgery that I turned it over to God and found peace.

I don't think I dwelt much on facial paralysis as I didnt' realize how much of an impact if could have and my doctor had not had any patients come out with facial paralysis in the 30 days prior (unless he lied to me).  I didn't know enough to ask about facial numbness as that is one of my biggest problems right now.  I also didn't understand the severity of the vestibular nerve or I might have feared all the outcomes.  I was just sick I was focused more on surviving.  I think when the doctor looks at you and says if you don't have surgery you're going to die and if you have surgery you could die does a  number on you!

[SKT]

My exprerience was similar.  My fear was surviving surgery. My symptoms were very sudden.  Ringing in my ear came on very suddenly on 30 October 03.  I ignored GP's who told me it was nothing and to just turn the radio up.  30 years old, with a sudden on set of LOUD tinnitus on one side when she's spent her entire working life in a quiet office - sometimes i really wonder about these GPs.  So I insist on a referral to an ENT.  I am told I'm overreacting. I knew something was wrong. The noise in my head was sooo strange.  MRI on 20 November and diagnosed with 3.3cm tumor.  Surgery on 17 December.  Did homework on best surgeons in the world over course of a week. Til then, I didn't give any issues such as hearing loss, vestibular problems, facial paralysis even a second thought. My only objective was to wake up from surgery. That risk of 1 in 100 not surviving, is just not low enough for me. I'm a lawyer. Work in litigation.  I always see things when they go wrong.  Can't ignore those stats.

When I woke up from surgery, I was on top of the moon. I had woken up. Mission accomplished.

[Gennysmom]

I'm pre surgery, so I'm doing the fear thing now.  But, honestly, I find myself worrying about only 2 big things (lots of little stuff, but nothing more than the day to day little stuff).  First is facial paralysis...I'm not vain, but I know it's a big emotional toll wearing your disease on your face, literally.  I just don't want to have to deal.  Second, is losing a quality of life that I currently have.  I'm not ready for that.  I'm not afraid of dying on the table because I know the odds are hugely against that.  Nor any of the other emergent surgery complications (stroke, etc) for the same reason.  I don't know how I'll feel if my quality of life is diminished past the point of acceptability for me.  I'm sure it's something I'll figure out how to address if I have to, but I don't want to. 

[Battyp]

Kathleen..having no facial paralysis only facial numbness and a whole host of other problems I often wonder if it would be easier for people to look at me and realize I have a problem.  I look normal (except for the crappy hair style  lol) but am not normal in the sense of my speech and gait which leaves people staring at me wondering if I'm drunk or stupid.   It's all so frustrating!  We're all sending prayers your way that everything will be fine and you won't have to deal with the unpleasant side of this!  Besides when I come to seattle we can't have both of us tottering down the street we'll get arrested for public drunkeness! 

[Captain Deb]

Off the subject a little, but BELIEVE me, the unsteady gait problems do get way way way better with time. My friend Mary Jane, who had a translab after failed GK at the same time as me kept telling me this and it was really hard to believe at 9 months post-op. My wonky gait is only evident now when I am really really tired, when I first get off the treadmill after 3 miles, and in the dark, especially after a long drive. I can  put my pants on without leaning on the wall or sitting down--socks, too.  I can even hold a one-legged yoga pose for a pretty long time. It takes a good deal more concentration, but it can be done!

Capt Deb

[Gennysmom]

Batty, you forget, I work with the police up here, even if we were drunk we'd be safe 

I think for me being able to wait till after a big dream vacation is a curse and a blessing.  A blessing that I can watch other people go through it, watch others improvements over the months, and have the time to feel secure in my decision.  It's a curse that I have this long to let my fears take shape and some days wear me down.  I have the utmost respect for everyone who has lingering issues because it takes something of you every day to get through the day (at least so I imagine). 

[HeadCase2]

  My biggest fears related to being able to continue working and supporting my family.  I didn't want my AN to change my wife and kids' lifestyle.  Fortunately, I'll be returning to work 4/17.
  Regards,
     Rob 

[Jeanlea]

Before surgery my biggest fear was ending up with headaches every day.  Luckily I don't have them.  I knew there there was a chance of facial paralysis and numbness.  I thought I'd have my surgery, go home quickly, and get back to normal.  It didn't quite work out that way.  I'm 7 months post-op today.  I still have facial paralysis and facial numbness.  Last week I had my lower lid lifted and the corner of my eye sewn.  I'm getting the feeling that I will be like this the rest of my life.  I am grateful that I have been able to return to work full-time, my balance is nearly back to normal, and I'm pain free.  Most days I'm happy, but I'm wistful for the face I used to have.  Sure would like to blink and smile again.

Jean

[GM]

Music has always been an important part of my life.  It helped me get through very difficult times...my parents divorce...both of their deaths...and my own divorce after 17 years of marriage.  How could something so much of a part of my life...be the thing I might lose?  How will I ever play my guitar again?  Sounds can take on odd tones making it difficult to even enjoy music.

I find it hard to plan for my future.  I'm 6 months into a new job...about to get remarried...and I feel like I'm always checking on this "thing" in my head before I make any moves.    HHhmm...can't buy a new car, may not be employed in 6 months depending on the next MRI.   HHhmmm...Can't base a career move (to a different state for better $$) and rely soley on my income...might have to have this cut this out of my head...   

I'm currently in a holding pattern waiting to see if it will stay the same (no growth).  If it does grow then there is a whole new set of worries!  Well I had it zapped once...do I zap it again?  Doc says 80% chance of success with re-zapping...   If it does grow again..do I take the chance of cutting it out?  Facial paralysis?  Facial droop?     Man all of this is making my head hurt  (or is it the tumor!)     


Here's the worst part - I can't talk to my fiance about this...it makes her worry about my health and she cries.   I can't talk to friends about it...they just don't understand.  I definately can't talk my kids about it (14 and 21)...I'm supposed to be indestructable, I'm the Dad...and they don't need this!   I can't even write about it here on this site...there are so much of you that are enduring so much more...that I am ashamed to hit the "Post" button at the bottom of this screen to post this. 

So what do I do...how do I handle it...I just deal with it....      Sucks

[Boppie]

I can help you out on the tones problem.  When the treatment affects settle down, you will hear clear tones again.  If you hear only from one ear you will hear clear tones.  Get someone to play tones for you on a well tuned or electronic piano.  Get someone to reproduce clear tones by key name on that piano.  Do a little ear training with clear tones.  Sing to yourself as you hear these tones.  This is ear training and you will get your sounds back.  I sing over a mic in a very big church.  Tones and harmoney I sing by ear and they are still there even though I have only one sided hearing.  I always make sure the support music and singers are on my good side.  This helps.  Just get in there with your music and find that part of yourself that gives you strength.

[Sue]

Here's the worst part - I can't talk to my fiance about this...it makes her worry about my health and she cries.   I can't talk to friends about it...they just don't understand.  I definately can't talk my kids about it (14 and 21)...I'm supposed to be indestructable, I'm the Dad...and they don't need this!   I can't even write about it here on this site...there are so much of you that are enduring so much more...that I am ashamed to hit the "Post" button at the bottom of this screen to post this. 

So what do I do...how do I handle it...I just deal with it....      Sucks

I totally sympathize.  This has been a hard illness to come to terms with and to talk about with other people. I find it very difficult to explain the symptoms, for some reason.  I am new at this, just getting a diagnosis finally last month.  I never have even heard of accoustic neuroma or gamma knife before. Now I have one and I'm gonna be on the receiving end of the "knife" soon.  I say just plan your life like you would if you didn't have the damn thing.  You can't be "on hold" forever. Keeping a diary/journal works for some people - a place for your fears, emotions, concerns to go. I did find it helpful to find THIS place, because at least you can talk to others who have similar problems. Sometimes, however, it depresses me because I read about the others who have had such bad or difficult outcomes with the surgery or other treatments.  It's kind of depressing.  There are always people who are worse off, but that doesn't take away the fact that you and I have something that's not pleasant and it is a life-changing event, no matter how big or small the changes.  My girlfriend just had her second knee replacement and we were talking about this exact thing. Soldiers in the Gulf War are getting their legs blown off, for God's sake, but that doesn't take away the fact that my friend is going through pain and misery right now.  Your feelings are your feelings. Nothing wrong with that. Perhaps there is a support group through your hospital...a meeting you can attend in person. I wish you good luck and hope you will be okay.  I know that honest to God, full blown depression can be a side effect of any chronic disease. So make sure talk to your doctors about this if you think this might be happening to you.  The 5 stages of grief apply to any life-altering event, not just death. I went through this when I learned I had diabetes. I had to get to acceptance, fast!  Consider yourself hugged!

1-Denial-

2-Anger

3-Bargaining

4-Depression-overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss of person as well as the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.

5-Acceptance-there is a difference between resignation and acceptance. You have to accept the loss, not just try to bear it quietly.