informal survey....

[Battyp]

After my 10 month follow up yesterday and a question from my doctor he got me thinking..I know scarey!
He walked in the room and asked me "knowing what you know now would you still go through the surgery"  I just wondered how everyone else felt.  Knowing what I know now and knowing how sick I was before surgery and knowing I wasnt' going to get any better only worse and that surgery was my only option I have to answer yes!
I took the fast track...diagnosed july 11th on the table august 23rd and they were worried I wouldn't make it until then.  I didn't have time to research, decide and change my mind and I only had one surgical option.  Just wondering how others felt.

Hugs to all,
Michelle

[Joef]

I would of done nothing differently, except maybe not ignoring my symptoms and going the Dr. a few years ago!

[Obita]

Batty:

I would not have changed a thing if I could do it all over again.  I had about 7 weeks between also.  Getting that thing "outta me head" was the most important decision I have ever made and also in my case the right one.

I feel like I won the lottery. Except for being deaf in one ear and multi-tasking seems a bit more difficult (my secret, I have not told anyone at work this one) I am no different than before May 13, 2004.

Cheers!  Kathy O'Brien

ps:  And as Joef just mentioned,  I shoulda gone to the doc earlier too - ah, lesson learned!!

[ppearl214]

hey batty.

By the dr asking that question... to me... it would be like someone saying "do you 2nd guess your decision if you could do things differently".  For me... as everyone here shared with me during my decision making process... never question your decision. Stick to it and whatever the outcome, you deal with it.

So, I don't question my decision. I'm fine with my decision and in my case, would not do a heinsight of it.

xoxox
Phyl

[Jeanlea]

Hey Batty,

Good question.  There are days I wonder what would have happened if I never knew about the AN.  I had very few noticeable symptoms.  My hearing was decreased 12% and noticeable only when on the phone.  If I didn't have good insurance I wouldn't even had had it checked out.  It was that minor. 
Now I wake up every morning with facial paralysis and numbness.  I still think I did the right thing by having surgery.  From reading some of the stories of other people I think I would have gotten a lot worse.  Think it might have been quick since the doctors wanted to do surgery as soon as possible.  I was diagnosed August 3 and had surgery on September 6. 

Jean

[Battyp]

thanks for sharing guys.  I think the doctor feels bad about my outcome as none of this was expected just knew it was a possibility.  I think he was trying to see if I regretted anything.  the  only thing I regret is believing the dr who misdiagnosed me for almost a year..not what my surgeon did. 

[nannettesea]

Nan, here.  I still fight with trying not to 2nd guess.  I wish I had Phyl's resolve about that.

If my Chicago doc is right and I have Mal de Debarquement, too, I would have not rushed into surgery, though I was sick for 4 months priior.

But since my symptoms only got worse, I would have either watched and waited or opted for radiation.

Nan

[tony]

I think that many on the list have some regret
or other, could I ? Should I ? What if ? etc, etc.
The truth is, in many cases (like mine for example)
the safe time to defuse these monsters may well
 have been 5 or more years ago
- when (often) there were no symptoms at all.
These things move from small to large over a 5-10 yr period
and give very little indication what is going on.
Many people pass away of natural causes
- without ever knowing they had an A.N.
(and by the time you present with multiple symptoms
- some damage has already occurred)
Often 12 mths misdiagnosis makes very little difference to
the final outcome - they simply dont grow that fast
It may make life a bit easier if we can comprehend
that no real consequence came of any error
- a similar outcome may have happened
 a week, a month, or a year earlier
- who can say
In one way, I/we are all very lucky that it happened now
- and not 100 yrs ago
Clue : we wouldnt be writing about the experiance....
Best Regards
Tony

[HeadCase2]

  The problem with the "knowing what you know now.." question is that you don't know what would have happened if you hadn't had treatment, or if you had chosen a different treatment.  So, to me, it's not a question that can really be answered.  We don't know what the alternative outcomes would have been.   
Regards,
 Rob

[DeniseSmith]

Hi, BP,

I had the fast track to surgery also, 34 days.  When they found my tumor with the MRI it was 3.5cm, when they removed it, it was over 4cm, mine did and was growing.  I had a blood vessel feeding the sucker.  I had no choice but surgery.

I do however, agree with Obita, I should have gone in a few years prior when my hearing started to go.  Then maybe it wouldn't have been so bad.

Denise

[Battyp]

Rob in my case I actually do.  I was so sick with head pressure/pain that I could barely get out of bed by the time they diagnosed the problem.  My brain stem was starting to twist.  I did have one neurologist tell me that AN's do not kill people and do not cause headaches and in her opinion do not need to be removed or treated.  Then she looked at my MRI and changed her opinion and said..oh yours was highly involved and needed to come out.  DUH  LOL

[tony]

your neuro - did she work at the 7-11  ?
Best regards
Tony

[arcteryx]

After my retrosigmoid surgery to remove a 3cm AN, I certainly do wish that I could have had radiation instead because it would've given me a much better chance at saving my hearing (which was lost). There were doctors who would have done it, but all of the well-known centers recommended against it.

The most frustrating part for me is that I've been getting annual physical exams for that last 20 years but not a single doctor ever caught it until it was already in the large category.  I would happily have paid the $1,500 MRI fee a hundred times over to get my hearing back.  I think eventually annual MRIs will become much more routine and start to notice these (and other things) much earlier.

Good question.  Sometimes that hardest part of dealing with all of this is the psychological aspect.

[HeadCase2]

batty,
 Ã‚ One of the damnedable things about AN is that we have to make decisions based on percentages a lot of times.  If I wait, what other functions do I risk losing.... etc.  In some ways, a large AN makes the decision to treat easier, not that I envy anyone placed in that position.  The likelihood of imminent brain and nerve damage and/or death preclude much choice.
 Ã‚ I guess I subscribe to making an informed decision and moving forward.  There isn't much point in second guessing the decison.  Partly because you can't change it, and partly because you can't really know (except in very serious cases like yours) how a different choice would have affected your future.
 Ã‚ I do occasionally think about some old love interest, and whether I should have pursued more enthusiastically.  But then again she may have turned out to be Cruella DeVille's lost twin sister.  

[amymeri]

Yes, I didn't have a choice to watch and wait because the tumor was 4cm and compressing my trigeminal.  I had no other symptoms because I sure wish I had known about this tumor when it was tiny so I HAD some options.

But if I knew what i know now I would have enjoyed my face more in the weeks leading up to the surgery.