Do you ever "forget" you have an AN?

[Sue]

Okay, I'll start a topic.  So it's been since the fall of '04 since I knew I had something wrong, and March of '06 when I found out that it was an acoustic neuroma.  I had my GK, and I'm trying to get on with my life - PAND (post AN diagnosis).

I'm probably going to answer my own question because maybe this depends on the residual symptoms that one has to live with....but has any of you actually gone through the day without thinking of your AN?  I was at Costco the other day and I went in, my TEEEEEEEEEEE* keeping me company, the facial numbness bothering me, especially around my eye, the oddball taste in my mouth, my tongue slightly "scalded" on the AN side, the slightly "off kilter", "out of body", "un-focused" mental junk going on and I thought...."Well, I suppose I'm the only one in here who has an AN!" And not in that "aren't I special" way, either.  I go to the mall, and think the same thing. I'm driving along thinking about regular things then the symptoms that tag along with me where ever I go, bubble to the top of my consciousness and say "Hey! Here we are! Don't forget about us!"  And I want to throw the whole darn bunch of them out the window and run over them a couple dozen times.  Perhaps the hardest part of this whole thing, for me, is learning to live with all of these "monkeys" that are my constant reminders that I have a dying tumor in my head.  Of course, then I feel guilty because I don't have terrible things going on...no head splitting headaches, no facial paralysis. But we've discussed this before...even though this isn't the worse thing that can happen (whatever IT is), it may be the worst that has happened to you (so far!). So, I'm dealing with the worst thing that has happened to me so far with my AN and I'd like to take a vacation from those critters that keep following me around.

So...a little bit of venting and a little bit of a question.  How do you all push whatever symptoms you have down and out of the way....What's the best MIND OVER MATTER techniques? 

Sue in VancouverUSA

* My aunt and I were out in the country awhile back and she said...Oh it's so quiet and peaceful.  I said, Yes, I suppose it is.  TEEEEEEEEEEEEEEEE.   

[Boppie]

Okay, Sue, I have a large mass of blood vessels inside my liver that I have known about for 12 years.  I go for nuclear scans and ultrasound to "watch" this thing.  It is a hemangioma.  I've not submitted to a biopsy.  It is just there.  If it grows I could need some very serious treatment.  I learned to live with this liver tumor.  And I have learned to live with the post op residuals of Translab. 

I feel most able to forget myself when I am busy with some other person's needs.  I guess this is called fulfilling my life task.  Now, I am dealing with recent news of another aging issue.  A few more visits to the doctor and more flowers to tend. Life goes on and the birds keep on singing.  Yes, I am able to forget my AN.  I have learned how to let go of negatives and tell others about the positives.  It happens.  God Bless!

[ppearl214]

Hi Sue,

Well, I think you know me well enough... how could I not chime in on this one? Great question....

For me.....as Boppie notes, I try to keep busy and do for others... sometimes I succeed, sometimes I don't.... but, the more I keep busy, the more I tend to "forget" about my AN (and other medical) issues.

As many of you know my family medical history (as well as my own medical history), life is too short... and I take my AN (and other medical) reminders as it helps to keep my spiritual side "in check".  So, when I have those times that symptoms decide to crop up (more often than not), I take them as a reminder of the road I travel, that I can conquer it and yes, I even "forget" about it from time to time as life holds my attention in other means that allows me to forge forward.

Yes, I OD'd on coffee today... sorry if any of that didn't make sense.

Infamous huggles to you all!
Phyl

(P.S.  Boppie, I had a liver hemingioma diagnosis last year... like you, "watch and wait".... we're not just AN twins!)

[mema]

I have dealt with Barrettes Esphagues for years.  It is a very serious pre-cancer to Esphagueas cancer.  I've been on medicine for it and endoscopies to check it.  I don't think about it at all, only when I have a painfull attack.  But the AN thing is always on my mind.  And I think its got alot to do with the symptoms that never go away.  And because we all seem to have multiple symptoms is a reason to.  I hope the day comes maybe after a few years of MRI's under my belt that it too will be in the back of my mind.                                 


                                                                         mema

[Boppie]

Phyl, how strange that we have the same boogers in our livers.  I have been told we share this tumor with 20% of the population.  Discovery is usually accidental.  Mine has shrunk a bit.  Doc says it is Estrogen related.  At least age brings something good, in the shrinkage department, I mean.

[satman]

boppie i like your outlook,life does go on
hell ! i quit smoking and look what happened.
i still have 2 percent
up there,scared to death that i will have to go through this
again,what if you get it on the
opposite side?
so many what ifs.i guess i've
learned lifes too short to dwell on it.

[Richey]

Sue, I can honestly say that today when I was trying to get the bathroom sink drain unglogged for about three hours I did not have one thought about my AN.

I think the key is just keep doing whatever you can, stay busy, and don't dwell on the things that these little buggers cause.

I'm still learning this too, and I have to be reminded sometimes.

I went to a funeral yesterday for a 52 year old lady who found out she had lung cancer just a few weeks ago. Her youngest daughter is getting married this Saturday. As the commercial says life comes at you fast sometimes and death too. So I was reminded to count my blessings once again and give my wife a few extra hugs.

Hang in there,

Rich

[ppearl214]

Hey Boppie, purely, like you, found by accident while working my pancreas issue during MRI and CT Scan.....the toss up was... was it a cyst on my liver or a hemingioma.... results show hemingioma (gawd, I hope I spelled that right!).  Guess as we get older, they tend to find more lumpy-bumpies when you least expect.  I've placed a retail order for a new body... it's being made overseas and hasn't arrived yet... I wish it would!    Phyl

Phyl, how strange that we have the same boogers in our livers.  I have been told we share this tumor with 20% of the population.  Discovery is usually accidental.  Mine has shrunk a bit.  Doc says it is Estrogen related.  At least age brings something good, in the strinkage department, I mean.

[TP]

Sue interesting topic...no question keeping busy will help us concentrate on the task at hand and basically forget about most of our problems.  Each of us experience life in different ways. Some of us have had very little health problems and some have experienced a great deal. My husband never has had a stich in his 54 years of life until last week when he had some cancer removed from his arm. For him even though this was minimal compared to what the rest of his family have experienced - it was and will be a small reminder to him that he is getting older, he needs to wear sun screen and he needs to constantly check his skin for other cancers.

For me what helped me get thru this past year (besides my relationship with God and prayer) was setting goals and working towards achieving them. I believe goals will help us with small and fulfilling rewards and accomplishments and draw our attention and focus from ourselves to others or activities that help us achieve goals and hopefully be a blessing to others.

I think about my health issues about 100 times a day (well maybe not that much) because I can't hear on my left side, I have double vision as well as facial paralysis, my head feels wierd as well as people asking me how I am doing constantly. However, I think about how blessed I am and how remarkable brain surgery is compared to other types of surgery. We really are fortunate we live in these times and are able with technology to remove or zap our tumors out of our head. I still am amazed a year ago I was in the hospital feeling horrible at this time with my second CSF leak surgery, just got over meningitis and a pic line in my arm having administered antibiotics 6 hours a day. Thank goodness time does erase some of the bad things that happen in our life! I like to think what we've been thru will help us to help others in some way.

[Sam Rush]

Sue, is TEEEEEEEEEEEEEEE   your tinnitus??  Except for SSD I was totally asymptomatic after my trans-lab at House, Thinking that AN I had was no big deal, as SSD didn't bother me.   Then, 6 months ago, the tinnitus started in my dead ear, and the taste disturbance.  This tinnitus is extrememly disconcerting, and I became extremely upset.  I had long talks with Dr. Brackmann and my local Dr's, and now I realize that I just have to accept this new reality of who I am.  I don't forget about it or rant   and rave anymore, but I have a new reality. I am now  Sam Rush, with hypertension, color blind, and now with tinnitus and taste disturbance and SSD.  BUT, I can still work in my medical office, work part time with the police, ride my horse, motorcycle, and bicycle, and still play golf badly.  My children are in good health, and I'm about to become a grandfather for the first time.

 So, is the glass half full, or half empty?? It is 90% full !!!!!

Do I think about AN?  Constantly as this tinnitus won't let me forget it. 

Has it ruined my life?? No, I am pretty much the same person.

Good thread, like the venting one.

[FlyersFan68]

I believe that my constant low pitched and sometimes hight pitched tinnitus in my reminder and primary menace. If the tinnitus wasn't there things could be easier. I could even forget the SSD. My children are a big help too because they are young and require lots of attention. This creates a good diversion. I think this is a great topic and one that we can all relate. My outlook usually is   ...."It Happened, It Can't Be Undone, It's Something I Couldn't Prevent, Was Meant To Happen To Me... Despite The Very Low Odds, Have To Make The Best Of It Even When I Start Feeling Down!

[Sue]

Thanks for everyone's reply.  Always nice to hear other's perspective on our common problem.  Well, yes, keeping busy and having your brain concentrating on something else is important.  I can get busy and then the AN issues recede into the background.  Sort of.  And yes, the TEEEEEEEEE is my tinnitus.  It's more of a ZZZZZZZZZZZZZZZZ I think.   

I have diabetes and thats much more serious than my AN, and I do think about it and manage it the best I can..but IT doesn't intrude into my thoughts nearly as much as this stupid AN - or the symptoms thereof.

So, anyway....gotta run.  Thanks for the encouragment.  We all have our ups and downs and I guess I had a down.

Take care everyone.

Sue in Vancouver USA

[Jim Scott]

Good thread.  Thanks for the idea, Sue.

I may not be the very best person to comment on this subject, based on the fact that I had only minor post-op symptoms.  Not that this will stop me from commenting.   

I was one of those fortunate folks who went through life with almost no medical problems - until my AN symptoms led to a (rare) doctor visit and an MRI.  That, of course, led to the discovery of a large tumor, lots of angst, microsurgery, radiation and now, almost total recovery over a year later.  I am thankful to God for His mercies. 

I do have a few lingering symptoms but they are mild and easily ignored. If necessary, I work around them.  My balance is good, very functional, but not yet where it once was (and may never be, again, I know) but I generally have no problem walking, going up and down stairs, etc.  I have a few small 'numb' spots on the side of my tongue, occasionally on my lip, but I can ignore them as they do not affect talking, eating or taste.  My left eye (the AN side) will feel a bit scratchy (the dreaded 'dry eye') if I get too tired or find myself in a breezy or windy environment, so I try to get my rest and avoid windy conditions whenever possible.  That is my 'workaround'.  I find my SSD to be my biggest handicap, yet I've had it so long now that I've fully adjusted and have incorporated it into my life.  I'm just thankful that I had excellent hearing for almost 60 years.  My tinnitus is a constant that I block out of my consciousness, for the most part. 

I'm rather pleased to be in at a restaurant or at the mall, just walking around, and thinking 'no one here would ever know I had major surgery last year'.  I think of my current condition as one of triumph, not loss.  My 'philosophy' is one of: 'This happened, I'm dealing with it and  I'm doing pretty well, too'.  I accept the hearing loss and the relatively minor lingering symptoms of the AN but I've made a real effort, as others have, of getting back to my 'normal' life.  As a matter of course, I don't dwell on the fact that I had an acoustic neuroma, major brain surgery and extensive radiation.  I don't try to deny these realities, I simply refuse to make my AN the focus of my life from this point on.  My last MRI showed positive tumor shrinkage and visible necrosis.  My neurosurgeon said my last neurological exam showed marked improvement.  I feel great.  As my signature says:  life is good.

As a frequent visitor to this forum I'm well aware that not every AN 'postie' can be as sanguine.  That only increases my willingness to be thankful and grateful to God for the outcome and to not allow less than a 100% 'perfect' recovery to be taken (by me) as some sort of insult.  Hardly.  I know the future holds an even further recovery and I look forward to that, rather than what I may have lost due to my tumor.  Indeed, life goes on.  How we choose to live it is up to us.

Jim


 

[Rc Moser]

No! My left side tingles, my an ear buzzes, my eye dries out, My head hurts most of the time, Noise is a PITA, extreme heat and cold seem to make it diffucult to function, I'm weak, get frustrated easily, hard to do numbers now, can't remember stuff, especially phone numbers ect...   

Ok here's the bright side. I'm not dead, glad to be alive, no three or four day migraines, just a day or two. Can do most things on most of the days.

[Sue]

The bigger the monkeys we haul around (those darn symptoms) the harder it is to forget about them.  We don't have much choice other than to learn to live with the monkeys.  Some of us have a  little monkey, and some of us have gorillas!  RcMoser I think you have a gorilla!! 

Simplistic, I know...but now I'm picturing all of us with our different monkeys sitting on our shoulders, or on our head, or clinging to our clothes....just following us all around town.  An interesting visual, I must say.

Sue in Vancouver USA