Author Topic: A survey: How about if we all "grade" how our AN affects our life everyday?  (Read 9404 times)

goinbatty

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Hi there,
Mine made it to 9 x 6 mm pre CK in 1/08.  Grade 1.  Constant tinnitis, occasional balance problems but not really bothersome.  And this random morse code clicking noise.  Guess that's ET (yep, my AN's name), calling home. 
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

Tumbleweed

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2.1 cm tumor. CK completed 7/11/08.

I don't let it stop me from doing most things, but I can't do technical rock climbing anymore (because of mild balance issues) and I live with mild fear it will ruin my career if news gets out about my tumor. I'm also a bit stressed lately because I'm in early recovery from CK treatment and Decadron-itis and feeling quite fatigued (but improving with each passing day  :) ).

Things could be a lot worse, however, so I'll give it a 3.

Tumbleweed
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

Dana

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Clarification - what I meant is that some descriptions I've read on the board in general (not this post specifically) sound like an 8 or 10.  Satman?

Hugs,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

satman

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hey there dana,it has been a very rough road but with all the support here and a feeling of legitimate caring i have put the depression behind me.
one of my favorite sayings is "the surgery was the easy part" now if i could just get this smile to straighten out !
i truly believe that the reason my tumor was 8 cm is because I [being a man] did what most men do best,ignored the symptoms.
guess i learned the hard way,ha,ha
kicked my little 8cm buddy to the curb-c ya !

Dana

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Satman - Definite kudos to you.  I have had long-term depression for decades, so I think it's GREAT if you've been able to overcome all that the AN experience threw at you.  Maybe in the "screwy" world we live in, an asymmetrical smile is most appropriate! 

Yes, I'd say the biggest down side to male 'chavinism' is the denial of symptoms and feelings among men, but things are getting better.  My hubby was diagnosed with MS a few years ago, after a year of "it's all in your head" (a classic for women that produced much of the frustration that created the women's lib movement, I think).  Luckily,he's a fighter, realistic and open to emotional change, but it's hard on him to not be in top shape.  Our vow is to enjoy life and have dreams despite it all.

My best to you,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

sabuck

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Dana,
Cool thread & topic. I'd like to play too.  :D

I'd say that although it took me between 6-9 months to climb the numerical ladder up to a level #2, that's where I am and have been doing everything that I ever did prior to AN surgery. I am not going to complain (too much) about the deafness, tinnitus, slight imbalance and a freakish little twitching sort of spasm in the left side of my jaw area. Life is good!  ;D 
Approx. AN 2.5 cm prior to surgery on 10/7/07)
(Cerebellopontine Angle Tumor)
The Ohio State University Medical Clinic (Drs. Brad Welling & John McGregor)
SSD post op - left side
BAHA surgery 4/25/08 Dr. Brad Welling 7/3/08 for Baha use!

rosalie

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Dana,
I know I'm still in the early stages of recovery since I just had translab surgery 2 1/2 weeks ago, but I would have to rate this a 2. My anxiety before about what to expect was probably a 5. My tumor was 1.9 cm. The few problems I do have aren't as bad as I thought they would be. Now I hope I didn't just jinx myself by giving my recovery a 2!
Rosalie
translab surgery July 1, 2008 with Dr. Luetje and Dr. Camarato in Kansas City to remove 2 cm tumor on right side.

sabuck

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Rosalie,
Wow! You are doing REALLY well to be at a 2 in just 2 1/2 weeks. Congrats!  ;)
Approx. AN 2.5 cm prior to surgery on 10/7/07)
(Cerebellopontine Angle Tumor)
The Ohio State University Medical Clinic (Drs. Brad Welling & John McGregor)
SSD post op - left side
BAHA surgery 4/25/08 Dr. Brad Welling 7/3/08 for Baha use!

FlyersFan68

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Pre AN long before diagnosis and symptoms     1
Pre AN with damaged hearing/pain/ringing/depression   5   
approx. 3  combined stages pre surgery

Post AN
Surgery/ICU    7
Balance right after surgery  4
SSD post surgery  6
No headaches (cranioplasty) & No csf leak  1
No facial problems whatsoever  1
Complete tumor removal/peace of mind  1
No titanium (bone flap put back) & dissolvable stitches  1
Balance now and weeks after surgery  1.5
No fat taken & no scar on stomach  1
Scar behind ear (cosmetics due to short hair) 4
Low ringing/tinnitus (same prior)  2
Post surgery depression  5

12 categories divided by 34.5 total
Total Average   2.88   say 3  (3 pre & 3 post)

* obviously based upon various factors and rationale*