Author Topic: waiting hardest thing to do  (Read 3079 times)

lmurray69

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waiting hardest thing to do
« on: July 11, 2006, 10:39:14 am »
I think that after you find out that you have a AN you then have to waite . For them to decide what is best for you.. I finely got a appointment to see the surgeon. after a year and half waite. I go the 27th of July.. Now if i can come up with the spend down for the medicade insurance I will have it made. I have been in and out of the hospital those little seizers keep me in for 3 days.. I now have a service dog..WEnt out the back step and the dog went first I sliped on the step and down i went..hit my center back..not the head thank god...I need a upboost...I have been so down I sleep all the time. late getting up and then earily to bed, then a afternoon nap.. I still cant get refreashed..How do you all do it...I wonder how long he will make me waite to do the surgery? Or of he will .everyone I have seen says it is to high risk...
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

antoinette

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Re: waiting hardest thing to do
« Reply #1 on: July 11, 2006, 11:21:58 am »
I know the first waiting is the worse.
You had your diagnostic and are left with no moral support and no real knowledge about this tumor.
Please, just consider that this being the very worse time for you has also been lived by all of us mostly because doctors do not understand what a ton of bricks fell on their patient's head. They know it is a small, benign, slow growing tumor. What they do not tell you is that worrying will only make it worse. Not perhaps the tumor, but you body and mental ability to fight it.
I had that tumor in 1990, got a name for it in 97, found immediately a support group, felt worsening of symptoms for 2 years and then it reversed. The symptoms almost disappeared, enough to make me believe I was one of the lucky few who see their AN recede in size (it happened to ONE patient among us and he left the support list never returning. It is called involution, the opposite of evolution.
It would happen more often if we waited more often.
I waited, but my tumor is still growing, now going towards the brain stem. Once there it has all the space to become a fat tumor, so I will get it then. meanwhile, I am living normally, no facial nerve severed, no radiation in my precious head, not much more than vertigo and unbalance, a dead ear side and not thinking very much about the whole thing.
Do not worry. learn a lot. Enjoy life even dizzy, (i try that all the time). Have a little drink and a springy walk with a nice elegant cane.
Good luck.
ant

lmurray69

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Re: waiting hardest thing to do
« Reply #2 on: July 11, 2006, 02:25:40 pm »
Thanks for the reply I did have radiation in Feb 05 it didnt help mine to is growing.. now i think i found a dr that might just take the darn thing out..I pray for gods blessings everyday look it could be worst....Bless you hope you too are well...
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

lee

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Re: waiting hardest thing to do
« Reply #3 on: July 12, 2006, 06:45:36 am »
i agree on the waitingme -- what are all your symptoms? man is 3 mm - and i have dizziness and a dull pressure headache most of the time. also what dr did you find to do the surgery? hang in there - they're lots of people "waiting w/ you" email me anytime.

lee
2x3mm an
symptoms:dizziness/dull headache/bell's (4 wks)subsided
steriods/waiting/another mri 8/31/06

lmurray69

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Re: waiting hardest thing to do
« Reply #4 on: July 12, 2006, 08:31:08 pm »
[I have Headaches ,dizzy all the time , I have to use the cain or my lab to walk..forgetfullness. is the worst. I swear I did that 10 minutes ago.. My husband says no hun you havent eatten today.. I say well crap , are you going to cook it... NO hun I just dumped it in the garbage, You said you didnt want it.. so I go sleep some more...Its funn isnt it...
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

lee

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Re: waiting hardest thing to do
« Reply #5 on: July 13, 2006, 06:33:42 am »
i hear you - i will stpo mid track and say what am i in the middle of doing??? and most of the time in 3 - 5 seconds it comes back or i just start on something new. hope you have a better day today.
lee
2x3mm an
symptoms:dizziness/dull headache/bell's (4 wks)subsided
steriods/waiting/another mri 8/31/06

Obita

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Re: waiting hardest thing to do
« Reply #6 on: July 26, 2006, 06:44:30 pm »
GOOD LUCK LMURRAY69 AT THE DOCTOR TOMORROW!!!!

Let us know how your appointment goes.  Best of luck and I hope you find your "Prince Charming" doctor - I think you have waited long enough for some answers. Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Kilroy1976

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Re: waiting hardest thing to do
« Reply #7 on: July 27, 2006, 04:58:57 am »
LMurray, is there a chance that the radiation could still work? I know it seems like an eternity, but you had radiation "only" 15 months ago. We all wish you the best; hang in there!
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida