Author Topic: No one asks anymore....  (Read 30901 times)

nanramone

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Re: No one asks anymore....
« Reply #15 on: April 21, 2010, 07:56:17 am »
I'm awaiting treatment and am grateful for this thread. It is helpful to know the down side, even while remaining optimistic.

I'm beginning to see this as just one more challenge in life; we live, we grow..and we adjust to change.


Let's all find at least one thing to be grateful for today! It's good medicine for the soul!

4cm in Pacific Northwest

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Re: No one asks anymore....
« Reply #16 on: April 21, 2010, 10:50:28 am »

http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322

Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)

Authors:  Stacy Taylor, Robert Epstein



Thanks for that link. Just ordered a copy through the library as per your recommendation.

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Lizard

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Re: No one asks anymore....
« Reply #17 on: April 21, 2010, 11:05:29 am »

http://www.amazon.com/Living-Well-Hidden-Disability-Transcending/dp/1572241322

Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life (Paperback)

Authors:  Stacy Taylor, Robert Epstein






Thanks for that link. Just ordered a copy through the library as per your recommendation.

DHM

Me too thanks Phyl!
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

opp2

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Re: No one asks anymore....
« Reply #18 on: April 21, 2010, 06:52:42 pm »
I was thinking about changing my name. Then when people address me, they have to realize I'm not the old me. I just can't decide what to name myself.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

tenai98

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Re: No one asks anymore....
« Reply #19 on: April 21, 2010, 08:14:52 pm »
possible new names: Ms Tumor Begone
Mr. Imnot Drunk
Ms Ino Blink
Mrs Wonky Head
 ;D ;D ;D
Jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Soundy

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Re: No one asks anymore....
« Reply #20 on: April 21, 2010, 08:57:18 pm »
When frustrated I have told my kids that I am going to change my name and not tell them what I have changed it to...

can't really add much that hasn't been said ... I get the same you look fine even when AN surgical symptoms or lupus symptoms are kicking my rear end ...ANs and lupus are largely invisible ... except for brain wrecks headaches , most things are brushed off as me being moody , getting older or any other number of reasons people come up with ... everyone knows when I am wrecking ...eyes glassy , stiff neck movement... when people talk to me I tend to manage a slight No shake of my head ...I sometimes feel like I should carry a mask with a sad face to pop on when I feel bad ... I may need to get me some of those cards printed up ...

what is funny is I also get irritated when people attribute any and everything I mis-do to the AN surgery ... or use it as an excuse why I wouldn't do something

I may be un-pleaseable  :)
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

kenneth_k

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Re: No one asks anymore....
« Reply #21 on: April 22, 2010, 08:35:11 am »
I will go for Mr. Imnot Drunk ;D

Seriously though, we have to make some jokes about it once in a while. Otherwise, it would be unbearable.

Kenneth

yardtick

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Re: No one asks anymore....
« Reply #22 on: April 22, 2010, 11:57:25 am »
chuckle, chuckle!!!
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

TP

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Re: No one asks anymore....
« Reply #23 on: April 22, 2010, 12:55:14 pm »
I totally relate to what everyone is saying. I have not visited here lately. I've had a very difficult last several months.

Back in December my knees went bad, I guess all my years of karate caught up with me. I had knee surgery in February on one of my knees and my dr surprised me by turning a simple procedure into me having to use crutches for 6 weeks (I work out of my house and live in a 2 story home-so not fun). Well I was a big grouch during that time as I scooted my butt up and down the stairs several times daily. Then my husband lost his job in mid March (he got a new one a few weeks later, thank you God but what an adjustment and sad time as he was with this company for 20 years) then our sweet german shepherd died in my arms a few weeks ago of heart failure. She was my co-worker, she sat at my feet every day for the last 10.5 years. I have not been able to cry since my brain tumor was removed in 2006. I have facial paralysis and no tears, well I cried for the first time and tears actually flowed from my bad eye. My dear Steffi (my shepherd) was the sweetest and smartest dog and it was just a horrible day. I lost my voice for about 5 days after she died, I guess I cried too hard. Now it has been two weeks and I find that I am sad.

I have never been a sad person but I find with my disabilities (SSD, facial paralysis), life changing things (bad knees, losing jobs) and then losing something special in your life, like your dog, it has been difficult. I am very blessed that I have my family, friends and a great church but you can't explain when you are sad and no one really understands why.

I appreciate this site to express my thoughts! I hope all the sad folks out there will find some joy this week!
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

tenai98

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Re: No one asks anymore....
« Reply #24 on: April 22, 2010, 01:37:33 pm »
oh TP
I feel your saddness at the lost of you shephard.  I to lost mine at the age of 13 yrs...she was my dearest companion and the last of my bloodlines.  then two yrs ago, I lost my other best friend, a coonhound at the age of 12 yrs due to a tumor and liver failure. To this day, I have not been able to replace them.
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Lizard

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Re: No one asks anymore....
« Reply #25 on: April 22, 2010, 01:57:37 pm »
TP
I'm so sorry for your loss, losing a pet is really like losing a member of the family.  They are so special to us.  And ya know when it rains it really pours.  I can totally relate, 2008 the year I was diagnosed was not a great year for our family, due to a whole laundry list of things. 

I think once the dust settles and things begin to get back on track, but that on top of our deficits it can make life tough to handle sometimes. 
Take care and God Bless,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

opp2

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Re: No one asks anymore....
« Reply #26 on: April 22, 2010, 08:28:16 pm »
Chin Up Kids 2010 is going to be a better year. We've lost many a pet to illness.(My mom raises chocolate labs) and we feel each loss exquisitely. But...we accept that we loved them, they loved us, and we had a great time together.

re Ms. Imnotdrunk

that is my favourite since I walk like a drunken sailor a lot. Just this week I went for a run, and at the 2.5 k mark I turned (well staggered around in a half circle) to head back. It was really quite entertaining...though I'm glad no one was looking...
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

yardtick

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Re: No one asks anymore....
« Reply #27 on: April 23, 2010, 05:34:30 pm »
Hey Nikki with you being a cop it is comical really!  Sorry I'm in a really silly place today which is good!!

I'd fail ALL sobriety tests I hope you realize that and I'm not a drinker, never was ::)

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

opp2

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Re: No one asks anymore....
« Reply #28 on: April 23, 2010, 07:18:18 pm »
Oh I know..I've said many a time in the past year...I'd arrest me for the way I walk  :D
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

cin605

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Re: No one asks anymore....
« Reply #29 on: April 23, 2010, 07:23:43 pm »
I got sick of even the doctor saying wow,you look great for being 6 months out or 1 year out and i am there becouse of neck and head spasms......finally one day i went for an appointment and made a point not to do my hair and make-up and dress nice...... I said..o.k. look at me this is how i feel!it was funy to see the look on the doc's face when i walked in ....he listened really well to my compliants and adressed all of them w/o saying well...you look great. ;D
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old