Author Topic: New thread by Dan/f706 and responses (moved from WTT thread)  (Read 17214 times)

Jim Scott

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #45 on: May 31, 2007, 02:22:46 pm »
Hi, Dan:

It appears as if you've decided on your preferred method of treatment (radiation) and are almost set on the doctor to perform it.  Thats real progress and I offer you my congratulations on coming this far under the stressful conditions you've had to endure while making these very important decisions.  Good to read that you wife is 'on board' and that your job is going well, too.  So far, so good.

Due to the size of my AN tumor, I didn't have the luxury of opting for either surgery or radiation.  Some of us don't, as you know.  Had I been given that option, I certainly would have chosen radiation - for all the obvious reasons.  Still, I enjoyed the blessing of having a very experienced, relatively humble and caring neurosurgeon who offered me the option of surgery to reduce the size of the tumor, then radio-surgery  to kill the tumor's DNA.  He recommended this approach to save my facial/cranial nerves from damage - and it worked.  My mature (older than me) neurosurgeon worked in partnership with a relatively young radiation oncologist.  The radiation guy was also very good at his job and respectful of my concerns regarding nerve damage.  Here I am, a year later, about 98% back to 'normal' and able to honestly tell other AN patients that there really is life after AN surgery - or radiation - as I've successfully undergone both and I'm still here to talk about it, as it were.

You are correct that, even with a totally successful outcome, you're about to pull the trigger on what will be a life-altering event.  That cannot be helped.  I didn't have a lot of choice due to the size of my tumor.  It all happened so fast - barely 4 weeks from the initial diagnosis to my being wheeled into surgery - that I felt like a passenger on a very fast train that I couldn't get off.  However, through it all, I never lost sight of the fact that I had to do this (the neurosurgeon was clearly alarmed when he saw my MRI).  Fortunately, my wife of 36 years, although she has had numerous surgeries for spinal problems and has other medical issues she has to cope with on a daily basis, was my rock, my advocate and my friend throughout the entire process.  She was with me from the first doctor visit and, following my surgery, spent 3 days in the ICU, sleeping on a couch in the nurses lounge.  I deeply appreciated her loyalty and understood her concern.  She's since confessed that, for a brief time during this period, she was afraid she might lose me.  Fortunately, that wasn't God's plan and we're probably closer now than ever.  A crisis can have that effect.

I believe your probable choice of either CK or GK is perfectly logical.  I trust your final decision will be made with confidence.  I'm sure you'll do just fine.  I know we all wish the best for you, Dan, and personally, I'll keep you in my prayers.

Jim



4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

f706

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #46 on: May 31, 2007, 05:31:09 pm »
Jim:

thank you so much for the kind comments and offers of prayers.  As a person who firmly believes in prayer that means a lot to me.  I have been in kind of a panic mode since the diagnosis, which is not at all like me.  I'm usually the guy pouring oil on the troubled water.  But this just came out of 20+ years of private worry about this.  I suspected exactly what it was so long ago, I was just afraid to have it confirmed.  So I guess you could say I took the "watch and wait" approach.  In hind sight I do not regret not acting on it, for I view it as 20+ years of being whole and strong during some very busy, stressful and demanding years.  This doesn't even begin to address the subject of available technology during the 80's.  Sure radio surgery was being preformed, but back then most of what was going on was the open exploratory surgery.  There was no internet for convient research and forums such as this.  I'm sure that in another 20 years some one will be waiving a tricorder over my left ear and restoring my hearing (dream on).  I'm very happy that you are doing so well.  When I read of others' difficulties I imagine me in their positions and I just can't seem to understand how I'd cope or get through it.  Like my wife said last night, "If I could have looked into the future when I was young and healthy and could see what was coming I think I would have died of fright".  Well, it's time to round up my bride and visiting children and head out to dinner.  Yum--The best hamburger in the world awaits me.

Dan

f706

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #47 on: June 02, 2007, 11:31:20 am »
Update:

I'm scheduled for Radio surgery for the 14th of June.  I go in the evening before for the pre-MRI then come back early the next morning (the 14th) where they will attach my halo and dust off their ray-gun.  I'll go watch a few old episodes of Howdy Doody or Sky King then they will give me some happy juice and bolt me to the table.  The doc will stand back and say "Ready, Aim, FIRE".  The handkerchef drops and the damn thing is executed!!!  Sure, I'll carry its corpse with me as a reminder of how precious most life is, but I shall not lament its passing.  I suppose the next year or so will be a time of apprehension and experiencing new and exciting sensations...  Wifey is worried that I will slowly turn into a weir-wolf or something, but I told her if anything happens it is likely to be more along the lines of accellerated aging...or turning into a weir-wolf.  All seriousness aside, this is a bittersweet time.  I've gotten what I wanted, but the reality of the future becomes more clearly defined.  I am entering a new room that I cannot leave and I don't know what is in that room.  I guess I wax too philosophical.  Ok, it's Saturday,  I'll go watch some more of Norm Abram building a table. 

Ta Ta for now,
Dan

Betsy

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #48 on: June 02, 2007, 01:27:58 pm »
Wow!  Dan, you sure do move fast!  I envy your decisiveness and wish you well.  As to the changes you may experience…who knows what the future holds with or without an AN?  Better plan on staying home for the first few full moons though, just in case.

How was that hamburger?

Betsy
15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009

f706

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #49 on: June 13, 2007, 07:48:48 pm »
Hi all:

I just returned home from my 2nd MRI.  In the morning I go back to the hospital and they bolt the frame to my noggin.  They tell me that they will give me some kind of sedative.  Anyway, they are going to do a CT and then "the guys" are going to take the MRI and the CT and lock themselves in a room and throw darts at the scans until they find a pattern they like.  They plan on taking a few hours.  After that fun, they say they are going to bolt my head to a table and aim their phasers at me and start pulling the trigger.  I should be home by 1-2 pm.  I'm taking Friday off work as I don't really want to appear with bandaids on my forehead and a set of raccoon eyes.  Oh, ain't life grand.  Well, thank you all for your good thoughts and wishes, I will carry the knowledge with me that so many are sending their good thoughts and prayers into the ether.  And Betsy, the burger was fantastic.  If you are ever in Salt Lake you want to eat the Double Big 'H' at Hires.  My very best friend and I used to go there every month--original car-hop type drive in.  One month he said he couldn't make it.  Two months later when I called to set up our lunch date his son told me he had died.  The SOB had a particularly vicious form of leukemia that killed him in just a few months after it was diagnosed.  He didn't bother to tell me.  His Best man.  I introduced him to his wife.  We used to run together.  He taught me to do stained glass.  I ramble.  The reason for the ramble is that experience with my friend taught me to always thank those that mean something to you in case you never get to see them again and they need to know that they were important to you.  You folks, although we've never met, are important to me.  So all who have posted to me, thank you.  You are important to me.

Dan

flier58

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #50 on: June 14, 2007, 05:06:33 am »
Hi Dan,
Wishing you best outcomes (and very little holes in your head  :)).  Will keep my fingers crossed!! Hugs to you and your wife.
Flier58

Ellenmn

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #51 on: June 14, 2007, 05:51:37 am »
DAN
Best wishes, I sure it will go great.  :)

Obita

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #52 on: June 14, 2007, 06:04:01 am »
Good luck to you Dan!!!

The "Postie" world welcomes one more!!!

Kathy ;D
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Jim Scott

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #53 on: June 14, 2007, 02:18:53 pm »
Hey, Dan:

I trust your radiation went well and you're on your way to a rapid, complete, uneventful recovery.  We care, so please let us know how you're doing.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

f706

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #54 on: June 14, 2007, 09:41:08 pm »
I'M A POSTY!!!!! ;D ;D ;D ;D ::) 8) 8) 8) 8)

All went well.  I arrived at the appointed hour and was "admitted".  I got to spend about 1 hour talking with the Radio surgeon and the radio oncologist.  They started the IV and I told a stupid joke and the next thing I remember was awakinging on a bed with the head frame on--about 3 hours later.  They had done the CT scan and then compared it and the MRI from last night and programmed their ray-gun while I was out.  They put me into a wheel chair and took me to meet the "HAL 2000"  (novalis linac).  I lay down and they bolted my head frame to the table and ran for cover.  For the next 10 minutes it made a whirring noise and moved three times.  They unbolted me wheeled me back to my room and removed the halo.  Nursy put bandaids on the forehead pin holes and I left.  I didn't even have to put on those lousy hospital gowns.  I came home and took a nap as the sedative they gave me was still making it's influence known.  I got up  and made dinner, called my kids and my brothers, forwarded the photos of me and my halo to close friends and loved ones and watched the "Pirates" tv show, and overhaulin.  Except for some minor bleeding from my scalp wounds I don't feel any different than last night.  The doc's agreed with each other that I'll have about a 75% chance of keeping the hearing I have and a slight chance of some additional loss or even some gain.  The facial nerve involvement, if any, will be very slight and transient.  They say there  are not likely ;D to be any balance issues.  But of course, now it is just a watch and wait.  I'm happy.  I've returned some business calls and plan on takiing my wife to see Oceans 13 tomorrow and back to work on Monday.

I will certainly keep haunting this site and reporting any, if any, changes or side effects.

Again, thank you all for your best wishes, prayers and advise.  I have to say, I'm sold on the radio surgery.  These guys do about 3/week.  They were great.

Postydan

Obita

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #55 on: June 15, 2007, 05:59:43 am »
Welcome to the other side Dan!!!

Have a stress free weekend!!!  :D  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

krbonner

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #56 on: June 15, 2007, 06:47:42 am »
Congratulations, Dan!  May your AN die a quick and event-free death now that it's been zapped.  Please keep us updated on how you are doing!

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Jim Scott

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #57 on: June 15, 2007, 10:23:02 am »
Congratulations, Dan!

I had a feeling the radiation procedure would go well for you and I'm so pleased to know that it did.  I believe in prayer.  As you know, I underwent invasive surgery (retrosigmoid) plus radiation (FSR) last year - and did just fine.  I also had many, many people praying for me, both locally and nationwide, thanks to the internet.  I know that you did, too.  That's a powerful thing that we're blessed to have, for those of us who choose to avail ourselves of it.

Don't overdo it but enjoy your 'postie' status along with the rest of us in that (usually) pleasant situation.  :)

We'll look forward to seeing your 'progress reports' here as you move forward.

Stay well, my friend.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

neal r. lyons

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #58 on: June 15, 2007, 12:28:58 pm »
CONGRATS DAN-YOU MADE IT OVER A BIG HURDLE!  HOPEFULLY, IT WILL BECOME DOWNHILL FROM HERE!  BEST WISHES!  NEAL
AN 2.6X2.0X2.8 (right side)                                           June 22, 2007
House Ear Clinic/St. Vincent's Hospital@ Los Angeles, Ca.

Translabyrinthine(5 1/2 hr.):  Dr.Brackmann-neurotologist    Dr.Schwartz-neurosurgeon    Dr.Kutz-incision@stitches    Dr.Stefan-internist

Betsy

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Re: New thread by Dan/f706 and responses (moved from WTT thread)
« Reply #59 on: June 18, 2007, 08:30:30 am »
Yea Dan!!!  Congratulations!
15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009