Do you ever "forget" you have an AN?

[Betsy]

Hi Sue,

My diagnosis was only a little over two months ago, and I've been thinking that I should be adjusting to the idea of having a little something extra in my head...but I confess, I still think about it almost all the time.  There have been a few occasions when I've been distracted enough to forget, but then it came crashing back.  I know I'm probably depressed, but I absolutely refuse to go back on antidepressants (too hard to kick).  I'm giving counseling a try, but it's not really going anywhere.

And of course, there are the reminders.  Vertigo, unsteadiness, bumps & bruises, and the never ending smoke alarm in my head, to name a few.  Sleep doesn't offer much relief...when I finally DO fall asleep, I dream about the darned thing!!

I've come to the conclusion that I need to take some sort of action, so I've chosen to go the radiation route.  I know it won't resolve all my issues, but waiting and watching is too passive for me.  I believe that once I've done something about it, I'll be able to move past this thing and get my life back.

Gee, I kind of feel better after getting all that off my chest.  Thanks for listening.

Betsy

[linnilue]

Hi Sue,  I have yet to go a single day without thinking about this damn tumor..yes, i said a bad word.  But I hate this thing.  I t has caused me nothing but problem after problem, issue after issue and I wouldn't wish it on my dearest enemy.  I used to live a very priviledged life and still some of it still is priviledged but the most important part of that life, which was "living well" was taken away from me in an instant.  I have my very own private "PITY PARTIES" hidden in my closet so that my family won't see becasue they will worry about me and I want them to live their lives and not be burdened by me.  I can honestly say that the most positive happiest moment came for me a year ago when my first granchild, Nicholas was born.  He made me want to live.  Every day when I see him I feel full of life and he makes me want to live to experience his life and have memories of us together.  If it weren't for him I would pretty much just exist.  I have had so many problems due to radiation damage that I used to ask myself why and now I ask why, why, why.  I loved life, I lived life and I gave of my life to my community and friends.  Now the friends are gone they flew the coup a long time ago when I could no longer satisfy their luncheon needs or fundraising activities.  It is a pretty lonely life here with my little acoustic neuroma.  I never imagined that at such a young age(I was 49 when dx'd) that I would lose al the fun, the travel, the people, the friends and even family(my sister accused me of being a melingerer when I could no longer entertain her because I had no energy, couldn't balance, had to use a walker to get around and she wanted me to sit by the pool with her but I was told by the doctor that I couldn't but she didn't hear that).  I often wonder why I was put on this earth and what in god's name am I supposed to learn from this tragedy.  So, to anwer your question, No, I never get to forget about this damn tumor(swear word again) because it doesn't allow me not to.

[rezski]

I actually don't think about my AN most of the time as since I was 19 I have had Crohn's disease and that has been my major focus.  The AN is a relative newcomer to my medical scene (since 2005).  I am constantly aware of the ileostomy I have had since 2003.  That was a curative experience as I am no longer sick from the Crohn's and my life is otherwise totally normal with no restrictions.  My AN is in watch and wait so it stays on the back burner for now.

[goinbatty]

I'll admit I think of this AN multiple times a day and at night if I wake up.  It's hard not to with the tinnitis.  With a repeat MRI due next month, it is definitely on my mind.  A bit too much.  This watch and wait mode is rough.  I'm leaning toward CK even if it hasn't grown but I'm still at the point where that decision fluctuates almost daily.  In some ways, I'm disappointed in myself.  I thought I would handle this better than I have.  The only other medical condition I've had to deal with is seizures (grand mal), that first occured at 21.  For that, I've been controlled on medication for years so I don't think about it all that much. 
It does help to stay busy.  I've just got to set goals for myself so that I hopefully won't get bogged down so much with this AN. 

[Dealy]

GoodTopic: Went too visit my Brother and Sister In Law last week while walking the dog. My sister-in-law made the comment I am not the same person I was. Geez. My head still feels wonky at times from radiation- I am losing hearing from radiation in my only heraring ear and you tell me I am different and changed. Wow-that was quite a blow. They say time heals everything-except these boogers will leave some kind of reminder. Some days I would just like too forget that I have this tumor in my head. With me my loss of hearing is the constant remider and possibilty of total deafness-how can one forget-but we must carryon with life and deal with the cards that was dealt too each one of us. A classmate of ours committed sucicide 2 weeks ago due too depression-so I look at this and say. You know in a way I am still blessed because I can still talk and think and eat and walk. So life is good-not great but good. Take Care All-Ron.

[Sue]

Wow, Ron....I agree that we are not the same people as we were.  Nobody is who goes through any kind of life changing medical problem.  It changes us somehow. We have more to cope with and decisions to be made and new information about things we didn't even know about that suddenly is the most important thing we should know and even though we are the same people, this changes some things about us.  If nothing else, I guess it makes us a little distracted from our usual way of life.  I guess we need to realize it just takes time.  Good Lord, look at those poor people who have been horribly wounded in the war - - coming back with missing arms and legs and horrible head wounds.  They are the same people but changed in ways we can't even imagine.  Same with us, most of us on a much smaller scale than that, of course. I wouldn't even suggest that we are on that same level, except for the very worst of our cases. 

Hang in there, kiddo.

Sue in Vancouver USA

[Gennysmom]

Unfortunately, unless I am dead to the world asleep, I'm constantly noticing some symptom or another....so I guess that means I never forget because I'm constantly compensating for something.  But do I let it rule my life?  heck no.  I am lucky in that I've had tinnitus since I was 15 or so and although I "hear" it, I don't notice it except for the couple seconds it may change pitch every once in a while.  I've had hearing loss to the point of near deafness for so long that I adjusted to that prior to surgery.  So I had two things going for me, I figure, so that I didn't have to deal with it suddenly post-op.  I can think of only two "pity parties" that I've had for myself since surgery....one was when I was facing re-opening of my site to fix a CSF leak, and one was post vacation realizing that I had to give up some of my "do before I die" list because some things involving crowds and cities are just not fun for me anymore, and I felt the need to grieve that.  I have good days and bad, and allow myself to be in the moment for both as I think no matter what it is you feel you should allow yourself to feel it.  But I never "forget".....and have a feeling I never will either.   But it's OK....life goes on whether we want it to or not so I will try to have more good days than bad!  

[Soundy]

Only ten days post op I may be speaking too soon

Before surgery I didn't know it was there except when I went to peek at it thru MRI in
the watching years

I have always had tinnitis... well since a concussion with amnesia at age 4... I have slept with something
 making noise to mask the teeeeeeeeeeeee (thanks for great description) as long as I can
remember... now with all hearing gone on that side nothing gets in to make it less...I definitely think
about the AN more now that it is gone than when it was in residense... ... I am waiting for other
things to crop up as I have been told they may

[nancyann]

Like Gennysmom said 'only when I'm sleeping.'   Unfortunately the issues from facial paralysis don't let me forget.

[Jeanlea]

I have facial paralysis and numbness which causes a lot of eye problems.  I'm reminded every two hours when I put in my eye ointment.  But there are times when I'm very into things like good books, things that totally occupy my mind.  I'm learning to accept the after-effects.  I remember laying in my hospital bed and realizing this body is not all there is to me.  I felt a real separation between my physical body and "me."  It gave me a peaceful feeling.  I try to get back to that as often as I can.

Jean

[Lainie181818]

I don't think any of us truly forget about our AN. Acceptence is the biggest thing, and it is hard. All of us had full lives before and yes everything is different now. I find this condition is totally a mental "game" on good days life can be so good and symptoms go hand in hand with our mental state. I no longer enjoy or involve myself in small talk. So for me a worse case synario is a gathering of people you don't know and trying to stand around keep your ballance, and decipher what anyone is saying amongst all of the ambian sounds. I have started to write on my calender when I have a good day, and I appear to be having more of them. I am 15 months post op and have suffered through 2 major depressions, panic attacks and almost turning into a " Howard Hughes" recluse. My marriage was almost destroyed too, but he hung in. If you have a good day, or a good 1/2 day make the most of it. I have also started to massage my face whenever I think about it, and It is starting to pay off. There appears to be movement, tingling and my smile is getting better. Trust me little changes make you feel like a million dollars. I don't think the recovery just "happens" I think you have to really push it along and try and think positive thoughts, and yes I know that is easier said than done. This website is my only contact with other AN's I think it would be so much better if I at least knew someone in the same boat. But I don't so I have to find my own reason for all this crazyness. Nikynu, you sound like you are really in a depression, are you seeing a therapist ? Reading your blog you reminded me of myself. My dizziness is still bad, so the other day I did a silly thing. I bought a pair of shoes with heels. I got them from Payless [ so they were cheap ] I walk around the house in them and even though I am not that steady it makes me feel great. I am planning on wearing them out sometime [holding onto my man of course] I have decided that I am going to be the one in charge of my new life, and not let this "uninvited guest" cause any more havoc. I 'm sure if my neighbors saw me staggering around in heels they will think I am Plastered, but who cares if it helps me that's all that matters. I think we should all put forward any suggestions we have, no matter how crazy. It might help someone else.
Good luck
Lainie

[Patti UT]

Yes,  me too,  the TEEEE is probably one of the worst post op symptoms to deal with.  There are days I just want to scream, WILL IT JUST STOP< JUST FOR AN HOUR.  just one hour of silence would be nice.  But then I settle back into the routine of dealing with it day in and day out.  Just part of the AN deal I guess.

patti ut

[Soundy]

I according to the doctors am doing exceptionally well...  ... if I am well I would hate to see
what it would be like for me to be doing poorly...

As I said before I have always ( 42 years ) lived with the teeeeeeeeeeeeeeeeeeee ... but now
with hearing gone on that side no way to mask it and after only two weeks it is driving me nuts...
I have found that I can get involved in a book it doesn't seem as loud but get a head ache if I read
too long...

I have no visible facial paralysis but last two days my right eye opens several seconds after the left and
when drinking  I am dribbling out right corner of my mouth... I see surgeon for follow up Tuesday and
these are top on my list of things to question him about... I feel like I am back sliding... I left hospital
in a high state because everything was going so well ...

I think I had a point to make but one thing I am experiencing is losing train of thought... I know I
am not going where I was headed but have no way to stop it or redirect... even talking I will go
off rambling about something else instead of saying ... I forgot what I was saying... don't want to
let people know I am confused 

Nothing to do with subject but ... today I went pillow shopping ... with 6 pillows I could not
find one that didn't feel like it was touching my head too much... I got a memory foam pillow
 surrounded by micro fiber down alternative... I had my son handing me pillows to lay on an empty
shelf and lay my head on them ( still in wrappings) I narrowed it to three than had him against his
wishes ( 27 years old and thought he was beyond Mamma's demands    )test them... we both
agreed on this one ... as he put others up he asked me did I know that it was $29... I told him I
was worth it and I left the store cuddling my new best friend in bed...

OK... maybe a little on subject... when you find something that has help you ...share it ...
I was getting head and neck pain due to not getting comfortable ... I took a three hour nap with
my new friend ...
first good rest I have had with out drug assist since surgery

[Sue]

Hi

Thanks to everyone for posting on "my" subject.  It helps to know I've got brothers and sisters out there in the world who are trying to deal with this also.

Well, I will admit...the "keeping busy" part is certainly true.  My husband and I went out of town to stay with my family and attend a wedding. We were busy from Friday late afternoon to just now...Sunday night and we had a good time and had a nice visit and saw a lovely wedding and my AN took a back seat for quite a while.  Only a couple times did the hearing problem bother me.  Lots of things were outdoors and it was just mostly a very pleasant weekend and I think I did get a little vacation away from IT.  So, I think that's the way I have to go...just be on a continual vacation, traveling and visiting in the great outdoors!!

Sue in Vancouver USA

[Soundy]

When I first found out about the AN some friends and family members thought
I should quit alot of things... I work with both Cub and Girl Scouts and volunteer
at school ... I work around our farm some and sub at school...

I named mt tumor Bennie and plodded on with this in mind....

I have it... it doesn't have me... this has got me through alot

Had I stopped being me I would be in a world of hurt now... I continued as usual
with interuptions for tests , MRI etc ...