Author Topic: Almost Two Years Post-CK For 2.5 CM Tumor  (Read 2401 times)

fbarbera

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Almost Two Years Post-CK For 2.5 CM Tumor
« on: June 05, 2009, 06:33:29 pm »
Hello Dear Fellow ANers!

I just posted another status update on my post-treatment progress on my website (see below in my signature line) -- the short of it:  I am symptom free!  I have hardly been thinking of my AN at all.  Zero dizziness, zero facial issues, zero wonkiness.  Hearing is stable.  I feel so blessed and fortunate. 

As always, I hope you all will free to contact me for more information about my experience treating my 2.5 cm tumor with CK.  More details at my site below.

Blessings to you.

Francesco

ppearl214

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Re: Almost Two Years Post-CK For 2.5 CM Tumor
« Reply #1 on: June 05, 2009, 07:45:00 pm »
Francesco,

what do I say? MAJOR congrats to you for this terrific update! Thank you for sharing this as it truly does help folks that are researching out their treatment options.  You KNOW I send continued wellness wishes!

Congrats on the fab news!.. and listen... don't be such a stranger, ok? :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mk

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Re: Almost Two Years Post-CK For 2.5 CM Tumor
« Reply #2 on: June 06, 2009, 05:34:54 pm »
Congratulations Francesco, it is great to hear your news.

I visited your website (which I had found very helpful when researching my options), and I noticed that you mentioned that you had experienced some trigeminal nerve issues that went away. Did you have these trigeminal symptoms even before treatment, or did they crop up recently? I am asking because I have basically accepted the fact that my trigeminal issues will most certainly remain for ever, so I was suprised to see that they may go away.
The other question I have is about the stable size. I remember you had experienced some swelling. So did your AN go back to its original size prior to treatment (in other words did the swelling subside), or has the size remained the same after swelling?

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

fbarbera

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Re: Almost Two Years Post-CK For 2.5 CM Tumor
« Reply #3 on: June 08, 2009, 10:30:33 am »
Hi Marianna,

Yes, my first symptom was some tingling/numbness on the right side of my mouth/face.  It intensified after treatment and then eventually faded away - can't remember exactly when but it was probably around 12-15 months out.  I was told at the time of treatment that the numbness would likely remain, so this is a pleasant surprise and not something CK doctors will tell you is a likely outcome.

With respect to size, yes, my tumor is now around the size it was at the time of treatment, perhaps slightly smaller.  I was hoping mine would be one of the shrinkers but the docs say whether the tumor grows or shrinks isn't necessarily correlated to symptoms, which are the important thing at the end of the day.

Please let me know if you have more questions!  For quicker response send me a PM. 

Be well!

Francesco 

Jim Scott

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Re: Almost Two Years Post-CK For 2.5 CM Tumor
« Reply #4 on: June 08, 2009, 04:00:43 pm »
Francesco ~

Congratulations on your super-positive almost-2-year report!  Very encouraging and much appreciated.  Thanks for the great update and may things only continue in this splendid direction!  :)

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.

catlover

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Re: Almost Two Years Post-CK For 2.5 CM Tumor
« Reply #5 on: June 09, 2009, 12:34:42 pm »
Hi Francesco,
It great news!  :D  I'm so glad you are feeling fine! It was a very positive report to get when you feel a bit dizzy after surgery yourself. I'm three weeks post-op tomorrow, but I'm getting better day by day.  :)

The best to you from Helene
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK