Author Topic: The End of Watch and Wait  (Read 6951 times)

Janey

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The End of Watch and Wait
« on: April 28, 2016, 12:07:35 pm »
Fellow ANers,
I am on my way now to Pittsburgh to have gamma knife radiation tomorrow morning with
Dr. Lunsford.  I was first diagnosed in the fall of 2014 with a 4mm left side acoustic neuroma.
As of my March 2016 MRI the tumor had progressed to 10mm.  Like all of us in W&W, I'd
hoped it would never come to this!!!!  But because of what I have learned from this forum these
last many months, I feel I have made the decision that is right for me.  I thank all of you
for sharing your stories, and I will continue to update on my own. May God bless each of you.

Sheba

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Re: The End of Watch and Wait
« Reply #1 on: April 28, 2016, 12:54:20 pm »
Hi

I just met with a local neurosurgeon in Texas who has been doing AN surgeries for 30 years, several a month.

He spoke very very highly of Dr Lunsford for radiosurgery,  He said the precision that they have is so amazing.   He sends his patients who don't want or can't have "regular" surgery to either Lunsford or to docs in Florida/Jacksonville.

So you are in good hands !!

« Last Edit: April 28, 2016, 12:56:16 pm by Sheba »
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

arizonajack

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Re: The End of Watch and Wait
« Reply #2 on: April 28, 2016, 02:52:43 pm »

But because of what I have learned from this forum these last many months, I feel I have made the decision that is right for me.

Not that you need any validation but, yes, I agree. Almost a year ago you mentioned that you had already lost most of the hearing in the AN ear, had some mild balance issues, and tinnitus that you could sometimes ignore.

That's pretty much what I went through and when the AN grew I also decided on GK and that was 3 years ago January. As of my last MRI, last April, my AN had just barely begun to shrink and my next MRI is due in September when I hope to be able to announce more shrinkage.

Best wishes for your successful GK.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

MG

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Re: The End of Watch and Wait
« Reply #3 on: April 28, 2016, 04:20:13 pm »
Best of luck Janey! Sending prayers for a good recovery.
Keep us posted.

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Janey

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Re: The End of Watch and Wait
« Reply #4 on: April 28, 2016, 08:52:00 pm »
Thank you all for your words of encouagement!  Having a difficult time going to sleep.  It's 11:00
and I have to be at the hospital at 5:30 AM!!!!!

mac84

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Re: The End of Watch and Wait
« Reply #5 on: April 29, 2016, 06:13:56 am »
Janey, good luck!  Hope all goes well. Let us know all the details!

Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

Janey

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Re: The End of Watch and Wait
« Reply #6 on: April 29, 2016, 09:40:59 am »
It is 11:35 AM and I am now on my way home from my gamma knife procedure.  It was not bad
at all.  Everyone was kind, caring and confident.  I was so relaxed with medication that I barely
was aware of the headframe being applied, which was a concern to me.  The only discomfort involved
is a bit of soreness at the site of the pins that secured the frame to my skull, and it is not severe.
Alll in all - I am so glad this is behind me, and I pray the long-term results will be good.    Thank you
all for your good wishes!   

mac84

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Re: The End of Watch and Wait
« Reply #7 on: April 29, 2016, 12:02:46 pm »
Fantastic! Travel safely and keep us updated! I really thought I'd be headed up there myself but seem to have bought myself another year.

Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

arizonajack

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Re: The End of Watch and Wait
« Reply #8 on: April 29, 2016, 01:04:52 pm »
is a bit of soreness at the site of the pins that secured the frame to my skull, and it is not severe.


That'll pass in a couple of weeks.

But if you want to have some fun, take a photo of your face showing the marks on your forehead and tell people you had your horns removed.

That's what I did. Still have the photo.

Gotta inject some humor into an otherwise serious situation.

 ;D
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Janey

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Re: The End of Watch and Wait
« Reply #9 on: April 29, 2016, 01:20:47 pm »
Arizonajack - my husband did take some pics!! ha! 
Cary - glad you bought another year!  Hope that will be the same story next year.
MG and Sheba - thank you for you well wishes. 
Forum friends are so understanding!!!!  Shared troubles are made smaller!

mcrue

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Re: The End of Watch and Wait
« Reply #10 on: April 29, 2016, 02:37:39 pm »
You were in very good hands. Best wishes for a speedy and successful  recovery. For me, Watch & Wait was the worst part of having an Acoustic Neuroma.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Janey

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Re: The End of Watch and Wait
« Reply #11 on: April 29, 2016, 10:29:24 pm »
Yes, Mccrue, trying to reaseach and chose a stretegy was one of the most challanging things I've ever
faced.  Although I wiould have chosen watch and wait forever if the thing hadn't been gettng bigger!
I have followed your posts closely since your gamma knife with Dr. Sheehan!   Hoping all problems will resolve and life with be great! 

MG

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Re: The End of Watch and Wait
« Reply #12 on: April 30, 2016, 10:34:36 am »
Glad it's over for you Janey! Take good care and rest now. :)

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016