Author Topic: satman update {sucks to be me}  (Read 7248 times)

Kaybo

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Re: satman update {sucks to be me}
« Reply #15 on: September 05, 2008, 03:25:59 pm »
Satman~
That does really stink but at least you did get some good news - think how it would be if you AN DID grow??  Be careful tonight!!
You know we are here for you - thanks for sharing this with us!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

robynabc

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Re: satman update {sucks to be me}
« Reply #16 on: September 05, 2008, 09:10:33 pm »
Sweetie,

I want to add that I know this is hard BUT,  I would like to point out that really it doesn't suck yet.  You may never have to go through surgery.  If you can not worry til there is something to worry about it may help.  And you can get more opinions and not have to take the opinions.  Just to see.  I know this is probably a shock for you so after it settles you may be able to find some other options.  You have lots of time this time too. 

Everything is going to be okay.  I promise.   I don't know how you feel about meditation.  If you are open to it some visualizations of the tumor not growing might help.  Even if it just helps you to feel better.  Just for a minute or two. 

Sending sunshine.

Robyn
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

Debbi

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Re: satman update {sucks to be me}
« Reply #17 on: September 06, 2008, 10:50:25 am »
Hey Satman-

I just saw your thread!  Wow, talk about sucky news - I am so sorry to hear about the meningioma.  Seems like you've been through enough. 

Don't hit the tequila too hard, okay?  Think of the headache...  Maybe just eat the worm?

Sending you a hug,
Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

mimoore

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Re: satman update {sucks to be me}
« Reply #18 on: September 06, 2008, 01:39:59 pm »
Oh Satman that is soo disappointing. When I was dignosed with a tumour then were not sure if it was a meningioma or a AN. After it went to pathology we found out is was an AN. I went to a great site for support http://www.meningiomamommas.org/, good for women or men.
You will get through this you are a fighter and a survivor.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

MAlegant

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Re: satman update {sucks to be me}
« Reply #19 on: September 06, 2008, 02:43:30 pm »
Satman, do not drink the worm.  I repeat, not the worm! ;)
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wendysig

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Re: satman update {sucks to be me}
« Reply #20 on: September 06, 2008, 11:46:25 pm »
Satman,
I'm so sorry to hear about this latest development.  You have certainly been through enough but as the others have said you have proved yourself to be a survivor.  I don't blame you for being worried and upset but you will get through this.  Hopefully it won't grow toward your brainstem and you will live to be 90 and never have to do anything about it.  Hang tough!

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Omaschwannoma

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Re: satman update {sucks to be me}
« Reply #21 on: September 07, 2008, 08:44:53 am »
....runs in an puts arms around you....

For someone who made it through, first, the diagnosis of 8cm brain tumor!?, second, the surgery (usually "second" is deciding form of tx, but your's was emergency), third, recovery, makes you SPECIAL.  In my opinion (I know you didn't ask for this but....) special people don't suck! 

Okay so your back to "first" with this crappy dx, we're here for you and certainly understand.  I certainly would stick to who I'm comfortable with, who has shown me they have the experience with my noggin, and who I trust completely.  Sounds like you have this problem solved, oh and by the way, may your "oma" stop dead in it's tracks! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

nancyann

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Re: satman update {sucks to be me}
« Reply #22 on: September 07, 2008, 09:21:57 am »
Hi John:  I echo what Wendy said,  keep positive thoughts,  believe you won't have to do a thing (I'll up the age to 101 !).

Always good thoughts,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Brendalu

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Re: satman update {sucks to be me}
« Reply #23 on: September 08, 2008, 05:18:00 am »
Satman,
I am so sorry to hear about your latest curve ball.  When I had my initial MRI with contrast they found a meningioma in the central nervous system part of my brain.  I asked if they were going to take that out when they took the AN out.  The dr said no that they could not operate on that part of the brain.  I almost didn't have the AN out because I figured that I would be a goner anyway with two brain tumors!  I had the surgery and have had tons of complications since then.  I now intend to live to be at least 100 and if I can't walk straight people can just assume I'm drunk!  You never know, I might just be!!  It sounds like you have a wonderful doctor.  Listen to him and let him do the worrying.  That just gives you gray hair!! 
I figure with all that is in my head, at least it doesn't rattle anymore!  Take care and I am keeping you in my good thoughts and prayers.
Hugs,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

hruss

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Re: satman update {sucks to be me}
« Reply #24 on: September 08, 2008, 06:44:29 am »
Satman,

i am soo sorry to hear about your newly found tumour. I have an AN and i live as if i will have it out and after that life goes on without further complications!

Apparently, this is not the case. Not only that you went through so much, but you have to go on your journey!!!
Since i am fairly new to this forum, I haven't followed your story. Can you give some information about the doctors you had to take your AN out? Where did you have your surgery? How much did it cost and do you have any complications after the surgery? I am expected to have facial paralysis and I am gathering infoto know how to deal with it!

For the time being just wait for the next MRI to see if the meningioma grows. When will you have another MRI?

Hug you!
Hrissy

4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

satman

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Re: satman update {sucks to be me}
« Reply #25 on: September 08, 2008, 07:37:18 am »
dear hruss,i tried to find my very 1st post but it's gone so i will try to remember this stuff.
i was at work one day and started getting headaches,along with these headaches i would get blurry vision in my left eye only,in my left ear i would hear this woosh,woosh sound,then all of a sudden i would start stumbling,granted these symptoms would only last for about 3 minutes and then everything was normal. needless to say i kept blowing it off as no big deal.
earlier that year my family dr. had put me on bp meds which i quit taking so i thought all of this was related to blood pressure,so when i went to see my dr. she said that she did not think it had to do with bp,so she sent me in for a catscan,that was when they found a 8cm mass,when they told me that i passed clean out,i then woke up in the E R,and then i was rushed into surgery, after a 17 1/2 hr surgery ,and a 3 day induced coma i spent 15 days in icu this is when i met dr.Chang [miracle man in my eye] anyway to make a long story short i spent 15 more days in in-patient re-hab in a wheelchair,graduated to a walker,then i spent 5 or 6 months in out-patient re-hab and started walking on my own and driving after 6 months,i returned to work full time 7 months to the day.
all in all i have about 27 hrs worth of surgery in a 4 month window.
17 1/2 hr tumor removal via translab,8 hour 7-12 nerve jump,and 2 hour eye weight and stitch in the corner of my eye,and yes, hair started falling out.
it is the people on this forum that helped me carry through. i had the surgery done at plano presby in plano texas[suburb of dallas]. most people on this forum get to research thier dr. i was fortunate to get the one i did and am actually glad it went the way it did because i would have drove myself crazy wondering if i had picked the right guy,make sense? my next mri is 1 year away,but i plan on sliding in there around 7 months.
kicked my little 8cm buddy to the curb-c ya !

Dfcman

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Re: satman update {sucks to be me}
« Reply #26 on: September 08, 2008, 09:30:05 pm »
John,

I had an MRI 6 months post op my Translab.  My surgeon still saw something there.  He said it could be the remnants of my AN or just a blood spot or other dead tissue.  I was told that if he'd never knew of my past history he would've guessed it was a meningioma.  That was over 2 years ago and my MRI still had no growth, in which  my last MRI which was this summer.  Keep the faith my friend. 

Chris
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

JulieE

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Re: satman update {sucks to be me}
« Reply #27 on: September 12, 2008, 09:46:22 pm »
Apparently I don't navigate this forum that well, because I just found this thread.  I remember that you hailed from Dallas, but I never knew that your Neuroma was 8cm!  I also just read your reply to Hruss about the details and I have to agree with someone's observation that you are a survivor in the bigger sense of the word.  I am sorry to hear you have something else to deal with, but others have optimistic reports of no new growth; and it sounds like you are in good hands with your miracle doc.  I remember the first person we thought to contact - the very day of our diagnosis - was a guy who had a meningioma (only person we knew who had a tumor in his head).  His story inspired me throughout my descision making process ( I did not find this group till later),
as he is possibly the most level headed person I know.  If you want, I know he'ld be happy to talk to you - just PM me and I'll put you in contact with him.  Meanwhile, you've got to survive the hurricane (we're lucky - it's projected path is just to the Northeast of us), and the tequila.  Make sure it is good stuff.
Take Care,
Jules