Author Topic: I'm new to this Club...  (Read 2398 times)

petgroomer

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  • Love to live... Live to love...
    • Vagal Schwannoma
I'm new to this Club...
« on: December 07, 2010, 08:06:51 am »
I am glad to have finally ventured onto this topic "Post-Treatment".
I am sad to say I should have read it a long time ago instead of being overly consumed with my "present" situation.
I had no idea at all the after effects of C.K.  I am reading about them now.  I am experiencing some of them now.
I also look forward to 3 yrs from now! :)
I feel fortunate to have all of you to share your stories and that I can learn from them.
You have No IDEA how valuable this site has been and will be for the entire of my life as I'm aware this schwammy will remain with me forever, just don't know to what extent.
xo
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: I'm new to this Club...
« Reply #1 on: December 07, 2010, 09:35:20 am »
Glad to hear your part of the post group.  I know that while we were in W&W we had to think about it growing at each MRI.  Now that we have had CK we seem to be waiting for the other shoe to fall.  I had mine about 3 weeks ago and am experiencing some minor side effects, just hop they stay minor.

TJ

moe

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Re: I'm new to this Club...
« Reply #2 on: December 07, 2010, 10:39:54 am »
Glad you got that treatment.
So how was it? What are you experiencing post treatment? We are all perplexed by the size of your growth and the CK. But yours was not an AN as I recall reading.....
hang in there:)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

jaylogs

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  • It's NOT a too-mah! (Anymore!)
Re: I'm new to this Club...
« Reply #3 on: December 09, 2010, 03:44:59 am »
Hey Pet Groomer, welcome to this side of the AN world.  I don't read the W&W group much, because it really didn't apply to me...but I am glad to meet you now! I hope that in the following months you'll be ok and are feeling good.  Take care and have a happy holiday!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

sunfish

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Re: I'm new to this Club...
« Reply #4 on: December 09, 2010, 07:27:12 am »
Hey, petgroomer, and welcome to post-treatment!  I've been following some of your posts, and I'm SO glad you found some sort of treatment at last.  I'm sure any post-treatment side effects you might experience can't be any worse than what you've gone through with that whopping schwammy (love the word!).  Take care!
Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

Tumbleweed

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Re: I'm new to this Club...
« Reply #5 on: December 18, 2010, 06:36:54 pm »
Hi, Rhonda:

Sorry to hear you're hitting a bit of a rough patch. It's to be expected, though, especially considering the size of your schwannoma. The good news is your symptoms are almost certainly to be temporary.

I remember that for a long time you had no hope of being treated, and you lamented that all you could do was wait to die as your tumor grew larger. As difficult as your side effects may be now, you most certainly would've had them at some point at the same -- and eventually worse -- intensity had you not been treated and your schwannoma continued to grow. But these symptoms are now part of your healing process, not a dying process (except that your tumor is dying)! It's the bitter medicine you must unfortunately swallow in order to get well. But you will get well. You are already on your way to better health. So, yeah, we toastie posties won't try to minimize what you're going through, because we know firsthand how difficult it is. But it helps to remind yourself that these side effects are all on account of a very positive thing.

You'll feel better soon.

We are all rooting for you.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08