Surprised about surgery

[kabby]

I went to the neurosurgeon on Tuesday with the idea in my mind that surgery is just not going to be a recommended treatment.  GK was disturbing, too, but seemed the lesser of the two.  I told my husband and everyone I know, "I am not going to have surgery.  It doesn't fit in my life!"  I was shocked at my own self since the neurosurgeon had me talked into trans-lab surgery within about 5 minutes!  Apparently, the AN which has been there quietly for a couple of years, is growing quicker and is pressing on my brain stem.  He felt that the vestibular nerve is already "shot" and that given I am healthy and young (he sold me right there- I am 53), surgery would be the absolute best option.  I felt very comfortable with the guy and trust him already.  So did my husband.  I am hoping to wait until July, although apparently surgeons take vacations over the summer and they would like me to plan it sooner.  We'll see.

I think I am coming out of the denial stage today a bit although this whole journey so far has felt sort of unreal.  I have to go tell my mom tomorrow and that will be very difficult and emotional.  I spend my weekends helping her care for my Dad who has had one foot in both worlds for some time (dementia).  He certainly won't get it and she is failing, too.  I am worried about her but feel like I have to let her know, especially since I may not be able to make the trip on weekends for a while.  Yeah, I am feeling pretty edgy today, tears welling up now and then.   The idea of surgery hasn't totally settled in, but there's at least a month or so to get used to the idea.

It could be worse....
K.

[NancyMc]

Kabby,
I was never going to have surgery either, but here I am on the other side of it.  It is a major deal.  I cried for two days and then just took a nice vacation and marched in there trusting in the skills and dedication of my surgical team.  They deserve all the credit for an outcome that has been way better than I expected.
I'm 58, and my neurosurgeon said I was young.  I thought perhaps he had trouble with math.
You'll be just fine, and you're right, it could be much worse.
We'll be at your side as you transition to Postieland.
Nancy

[nteeman]

Kabby,

I too was looking for another way to deal with my AN other than surgery but, like you, once I got all the info I realized that surgery was my best option. I had my surgery in January and I am so glad to have that bugger out of my head. Yes, it is an ordeal to get through but the first 2 days are the worst and from there it only gets better. I was driving in 2 weeks and back to work in a month. Gear yourself up, set some goals and make up your mind - you will get through this.

Right now the people around me at work and in my personal life can't believe I just had brain surgery.

I wish you well and hope all goes as smooth as possible.

Neal

[lori67]

Hi Kabby.

It does seem to make you feel better to at least have a plan, so I think once the initial shock wears off, you'll feel okay with the whole thing.  Having a good feeling and trust in your surgeon is so important, and I'm glad you found the right guy for the job.

I had the same situation with my parents - my dad had advanced Alzheimer's and would not have understood, so we chose not to tell him.  I think it was best in his situation.  He's always been a worrier when it comes to his kids, so having him worry but not really be able to understand the whole situation would have made it worse.  I probably wouldn't have told my mom if I didn't have to, but I figured she might pick up on the deafness or the facial nerve issues or maybe just the new hairdo.  So, I  told her but made it seem like it was no big deal - like a trip to the dentist.  She had enough to worry about with my dad.  It was only afterwards that she said she had no idea how big a deal this was.  My plan worked!   

You'll do great - just remember to ask for help if you need it, and take it when it's offered.  Maybe someone else can help out with your mom and dad for a little bit while you give yourself time to heal.

Keep us posted!
Lori

[grega]

Kabby ... best to you as you head toward AN surgery, and as you break the news to your Mom.  With the solid trust that you & hubby have in your doc(s), and with the knowledge that the AN is benign, being strong in explaining your decision to your Mom will help you.  But, sure ..... go ahead and get emotional .... that's entirely OK!

And don't hesitate to ask for help from friends and loved ones for you at home, as well as with your parents.  (a local home health aides can be especially helpful in time of need)  You might be surprised that you'll be visiting them sooner than you think.  Ask someone to do the driving for you.

I was also young like you, and that's what I told my docs - haha!  And then I went ahead and had the surgery.  4.5 yrs later, I'm enjoying all that I enjoyed prior to 11/04 (e.g. family and friends, choir, golf, roller coasters, etc, etc)

I truly pray that you'll get thru it with flying colors, and be out and about in no time!   

Greg

[Lilan]

Kabby, congratulations on your decision. I too was insistent that I would not have surgery, and now I'm very at peace with it coming soon. We move past denial to acceptance eventually 

[Jim Scott]

Kabby ~

Well, denial is the common initial reaction to an AN diagnosis but of course, at some point, we have to move past that stage and deal with the fact that we have a benign tumor in our head that has to be addressed in some way.  I can empathize with that feeling of unreality you're experiencing, too.  In my case, I received my diagnosis and had surgery scheduled for barely 10 days later!  This was the result of a 45-minute consult with a neurosurgeon that had decades of experience removing ANs.  Once he saw the size of my tumor (almost 5 cm) and how hard it was pressing on my brainstem, he wasted no time in setting up a plan of 'attack', assembling a surgical team (some from out-of-state) and scheduling an operating room.  Due to pre-op complications, the surgery was pushed back another week, but still, there wasn't much time for denial.  On hindsight, I think this was a good thing.  I tend to procrastinate.  That wasn't an option, once I saw the neurosurgeon.  I was 63 at the time of my diagnosis and in good physical health.  My age was never mentioned, pro or con.  My parents are deceased so that wasn't an issue for me.  I have one sister, 5 years younger, who is a widow (her husband died of brain cancer) and lives a few states away.  She was called and spent a good deal of time on the phone with my wife, as they shared the experience.  However, telling relatives and friends is always a bit of a burden.  It depends on a lot of factors.  I announced my upcoming surgery in church, where most of my friends are, and received an outpouring of sympathy and offers of assistance.  My minister and 4 church Elders were with me as I was wheeled into surgery early in the morning of June 7th, 2006.  I know that many prayers were said for me and I'm grateful for all of them.  I believe they made a difference.   

That you're comfortable with your doctor is a very important factor.  No one wants surgery, much less, AN surgery.  However, this surgery is necessary.  I think you'll do just fine.    Let us know your surgery date, when you have one, and put it on the 'AN Treatment Calendar' http://my.calendars.net/AN_Treatments or ask, and a moderator can do it for you.

Jim

[kathylittlejohncobb]

Dear Kabby,
Hi!  I just want to chime in and say I agree with everything already said here.  You already seem to have your wits about you, and the fact that you are worrying about others speaks well for you!  Do accept help from those who care about you; take care of yourself; and before you know it, you will be able to help your loved ones again.
Keep us posted about your journey and let us know of any questions you have.  We are for you!
Kathy

[leapyrtwins]

Kabby -

you're in good company here.  First thing I said when my neurotologist told me I could have radiation or surgery, and explained the recovery time of each, was "there is no way I can have surgery".    All I can say is never say never 

As others have said, you'll do fine.

Good luck,

Jan

[MAlegant]

Kabby,
I remember saying "I do not have time for surgery" prior to making the decision to have surgery anyway.  I was not a good candidate for GK, much to my dismay, but I have to say I would not change a thing, even though I deal with a few issues.  Good luck to you; you seem to have a great attitude!
Best,
Marci

[Lilan]

I was feeling distinctly dizzy while running errands yesterday and for the first time I was like {addressing my vestibular nerve} "You just wait, *&^%$$(*. You are about to get yours -- Snip, snip!!!" Mwah-ha-ha.

I cannot TELL you what a 180 that is from my misery and terror at the thought of surgery mere months ago.    It's very empowering once you come around.

[mwman]

Kabby,

My situation was nearly idendical to yours. The denial, the aging parent, etc. My surgions were very confident and I was relieved after the decision for the operation was made!  My Mother was 90 years old at the time and I chose to leave out most of the details because it would have been impossible for her to come to the hospital on the day of the surgury. Afterward, I told her all about it. With the support of my family and medical team, I went into the operation with 100% certainty that all would go well, and it did for me as it will for you.

Joe

[Kate B]

Apparently, the AN which has been there quietly for a couple of years, is growing quicker and is pressing on my brain stem....I felt very comfortable with the guy and trust him already.  ...It could be worse....
K.

Hi there,

We've all been there in the decision making process and until you have the particulars relative to your tumor (size and locatiion) it is hard to know the options available to you.

Yep, when it is pressing on the brain stem, surgery is the recommendation.  I am glad you had a comfort level with the doctor.  Who did you consult with?

Kate

[kabby]

Thanks everybody for your encouraging and kind words!
I told my mom yesterday--leaving out 90% of the details.  I think it sounded to her more like I was getting a manicure and tummy tuck.  It was pretty funny actually.  My sister showed up to give me a little support and some comic relief.    We will bump up the community nursing hours for them when the time comes, and hospice will come in more often as well.  And both of my sisters will take over my shift.  So, my parents will be taken care of.  On to my husband and kids!

My nesting instincts are starting to kick in--surprising since I don't know when the surgery will take place--but I may as well take advantage of the extra energy I have right now and clean and organize things so I won't have to worry about it all during recuperation.  I plan to take full advantage of the time off!

I visit Dr. Bigelow, the Otorhinolaryngologist, on Tuesday to have another hearing test and I'm not sure what else.

Thanks again!

[Kate B]

Good luck with your doctor visit Tuesday.  Here is an older thread that may have some relevance related to questions for the doctor.  It was my experience that if I didn't have the list to write down the info, the doctor would often finish and I'd forget a question etc.. if they are useful, use them:-)


Questions to Ask the Doctor
http://anausa.org/forum/index.php?topic=53.0

Kate