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Author Topic: Hello  (Read 3252 times)

Kaybo

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Hello
« on: January 15, 2008, 08:13:02 pm »
HI!  I am totally new at this, but an old hat at living w/ the aftermath of an AN.  I had my AN removed in Dec. of '95.  At the time, I was the 2nd youngest documented person to have a tumor so large.  I was 25.  I did seek out the ANA & received the 1st newsletter (before e-mail ones) but it was just so depressing (the WHOLE issue dealt w/ the ever-so-slight chance of a reoccurrance) that I called them & ask not to be sent anymore!  I just went on with my happy, little life and never looked back!  :o)  I have just jumped back into the whole AN stuff b/c I want to try to help others going thru the same thing.  Anyway, y'all seem to have the same attitude (& humor) as I do so I hope that we can chat!!  :o)
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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!

Sue

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Re: Hello
« Reply #1 on: January 15, 2008, 08:46:54 pm »
Welcome Kaybo,

I am sure you will be of great assistance to many people on this forum who come here dazed and confused.  Sorry you had that prestigious honor bestowed upon you to be the second youngest with a big tumor.  Now, of course, we all want to know the particulars.  How big?  What was your surgery?  Where, when, how?  You, know...curious minds want to know.  Hopefully you are doing well.

Sue in Vancouver USA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Joef

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Re: Hello
« Reply #2 on: January 15, 2008, 09:02:11 pm »
Welcome!! ...  ya, the largest tumors seems to be from kids  >:(
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4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Kaybo

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Re: Hello
« Reply #3 on: January 16, 2008, 02:01:09 pm »
After seeing some of what others have been through, my story doesn't seem that bad!!  Back then, they didn't share as many details OR (probably) I was just a young, dumb blonde who was very naive!  They told me I had to have the tumor out ASAP and so I did -- they didn't even tell me that I would lose my hearing!  I probably didn't ask the right questions, but we didn't really have time to do much research and the internet wasn't such a big thing then.  The tumor was the size of a man's fist and had totally moved my brain stem to the left side of my head.  I was in the OR for 14 hours and had a stroke while on the table.  I feel very confident in my Dr.'s, I just had a really big tumor.  I was the 2nd youngest then, unforunately for others, probably not now.  My doctor was at the Baylor College of Medicine in Houston and I had surgery at Methodist Hospital.  I had been a PE major in college, but was teaching 1st grade at the time.  I could walk, but not well, mainly from the stroke and I had to totally learn to write again (in fact, I still write on the bulletin board w/my left hand and paper w/my right!).  I went back after 3 months w/ LOTS of help & support from my fellow teachers.  My face is completely paralyzed on the R side -- I did have a 12/7 Graft a year after my original surgery since I had not regained any function.  I have had my R eye sewn shut but is now reopened and FINALLY have a gold weight there (they got it right after 3 tries and it was 7 years before they did it!!!)  Of course, I don't hear at all in that ear.  Aside from all of that, I have a SUPER life: a WONDERFUL husband (I'd been married 1 year when diagnosed/surgery) and went on to have 3 beautiful daughters (I got pregnant less than 1 1/2 years after surgery -- not my smartest move, but I wanted a baby so bad!).  I just started a blog, but I don't know if I am suppose to put that address here - let me know if you want that!  Did I leave anything out?  Oh yeah, I never had memory loss before, but have some now and had HORRIBLE headaches before but rarely ever now.  I had a lot of nosebleeds for about 5-6 months right after surgery. but none now either.  Like I said, I feel VERY fortunate!!
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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!

jerseygirl

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Re: Hello
« Reply #4 on: January 16, 2008, 02:49:17 pm »
Hi, Kaybo,

I am sorry you had AN but really glad you decided to join us. I also had my huge tumor removed at 25 but a few years earlier, in 1988. I also got pregnant too soon ( I feel) after the surgery. I did not have a stroke but probably looked like I did. Thank God the functionality is returning! How are you walking now, so many years after surgery?

               Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Kaybo

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Re: Hello
« Reply #5 on: January 16, 2008, 03:22:50 pm »
I actually get around really well - except when I am tired!  Of course, I have a lot of crazy bruises all the time since I never know when I will lose my balance and just fall into something.  I have just started working out again -- I think I could have (physically) sooner, but just couldn't manage it w/ all the demands of little kids (the last 2 are only 19 months apart).  I think that once they could do more for themselves, I could redirect that energy to something else.  I started Weight Watchers & going to the gym (@ 5:15 am) in September and have lost 23 pounds -- snaps for me!!
Logged
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!

lori67

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Re: Hello
« Reply #6 on: January 16, 2008, 03:47:34 pm »
Hi Kaybo!  Good for you for being so positive and wanting to help others out!  It sounds like you really went through a lot with your AN!  But it sounds like you're a pretty tough cookie and came through it with a great attitude!

And good for you for the Weight Watchers thing!  By the way, I think chasing after 3 kids counts as working out - and then some!!

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: Hello
« Reply #7 on: January 16, 2008, 05:09:52 pm »
I definitely think chasing after kids is a workout -- sometimes I was carrying 2 at once (cut back on that though when I lost my balance & fell w/ them both at my older daughters ballet class - how embarrassing! - lol)!  People always thought I lifted weights and I replied only if picking babies up off the floor counted!!  :o)  Thanks for the warm welcome!
K
Logged
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!

Boppie

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Re: Hello
« Reply #8 on: January 16, 2008, 06:25:59 pm »
Hi, Kaybo, I had my tumor out in Houston, too.  I live in Victoria Texas.  I am so glad to meet you and I am surprised to hear of such a large tumor that was treated at Methodist in 95.  We just didn't get news of it.  You are a trouper! This forum is a great place, a place to share and help others while you are doing it.
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OMG16

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Re: Hello
« Reply #9 on: January 16, 2008, 06:38:49 pm »
Welcome to the best forum on the internet I think you will fit in nicely here.  I'm sorry to hear of all you have been through.  It sounds like you were mature beyond your 25 years and to have so much to be proud of.  Congradulations on your weight loss!  I would love to read your blog.  You can just send me a PM and let me know where.   :) 16
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I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Jeanlea

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Re: Hello
« Reply #10 on: January 16, 2008, 07:05:24 pm »
Hi Kaybo,

Welcome!  Your recovery sounds like it's going well for you.  You have adapted well.  I'd also love to read your blog.  Send me a PM with the address.  Are you still teaching?  I'm also a teacher.l

Jean
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translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Kaybo

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Re: Hello
« Reply #11 on: January 24, 2008, 08:00:26 am »
Good Morning to All!
I found a girl through a search - her name is Shalla.  I haven't really communicated w/her except to post on her blog, but she is having surgery tomorrow.  She is married & has a 5 year old girl.  Please keep her in your prayers over the next few days -- I have her blog address if anyone wants to send her a little note!
Thanks!
Have a great day!
K
Logged
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!

OMG16

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Re: Hello
« Reply #12 on: January 24, 2008, 10:35:00 am »
K I will keep her in my prayers and can you PM me with a link to her blog.  Thanks and have a great day. 16
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I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.
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