Author Topic: the stupidist thing people said....  (Read 37541 times)

Mark

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Re: the stupidist thing people said....
« Reply #105 on: March 23, 2006, 08:02:32 pm »
Hi Karla,

I agree with you that I see AN's classified as brain tumors on a lot of very reputable medical center web sites or in discussions with very widely respected clinicians. My own theory is that it is the simplest way to categorize for people doing web searches or in talking to patients so they can understand the general location. I had this discussion with Dr. Chang and technically it is simply a skull based tumor or a vestibular schwanoma. It occurs in the skull, but it never does become involved with or connected to the brain. I'd be willing to bet money that if your countered any neurosurgeon who called it a brain tumor with those terms, they wouldn't disagree.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Karla83401

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Re: the stupidist thing people said....
« Reply #106 on: March 23, 2006, 10:37:34 pm »
Mark,

Frankly I like the idea of it not really being a brain tumor and that it just happens to occur within the skull. It also makes sense because my reading has also indicated that the tumor actually starts in the ear and simply grows into the skull. I have told people all along that if I was going to have a tumor that was by my brain that this was the type to get. I can also see why doctors attempt to explain the tumors in the simpliest way possible. I think that most people (myself included) are freaked out when they are told that they may have to have their skull opened up to remove a tumor. I will try explaining it the way that you did when talking to people as I think that it will help reduce confusion and unneccessary worry in friends and familyl.

Thank again,

Karla
diag. 2/23/06 left side
4x8x6mm bony area
1.4x.1.1x1.1cm brain area
waiting for surgery in May 06

Gennysmom

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Re: the stupidist thing people said....
« Reply #107 on: March 23, 2006, 11:01:04 pm »
I haven't run for the Webster's yet, but I suppose it depends on if you're considering "brain" as strictly being the cerebral cortex.  It's what most people think of when they think brains, the grey matter.  But I also think that the bits attached to it are all part of it, including the nerves, hypothalimus, pituitary gland, etc.  All that together is the "brain". 

What I've been tellng people to ease them into it is that I have an overgrowth of cells on the nerve that is in charge of hearing/balance.  Depending on who the person is, I may go into it more than that.  Or they may ask me.  At first, I was trying to be real careful because it bothered me to say something that obviously made them uncomfortable, but at some point realized that I didn't want to feel any more uncomfortable than I already do.  I find if I distract most people with technical details, and make it sound like an interesting thing to study, most people walk down that "fascinating" path with me, and are put at ease.  This just comes with the level of comfort I feel in my research about what I have.  Amazing what one can learn in a few short weeks. 

Having the ANA booklets around for anyone that is really that interested in me has been helpful as well. 
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

GM

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Re: the stupidist thing people said....
« Reply #108 on: March 24, 2006, 01:08:57 pm »
I refer to my tumor (when someone asks me about it), as a non-cancerous tumor on my left hearing nerve...that seems to be plain enough for them...
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Kathleen_Mc

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Re: the stupidist thing people said....
« Reply #109 on: March 24, 2006, 05:48:22 pm »
Mark: In fact A.N. can become involved with the brain. Although it doesn't innervate the brain it can displace the lobes and cause temporary damage. I believe also the cranial nerves are considered "part of" the brain but I could be wrong about that.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Mark

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Re: the stupidist thing people said....
« Reply #110 on: March 24, 2006, 06:29:00 pm »
Kathleen,

I agree that the AN can affect the brain through displacement of the cerebellum and other elements if it gets to sufficient size, but that would still not "organically" make it a brain tumor per say. The second part of your post is a very interesting perspective which I hadn't considered before. Are the cranial nerves considered a part of the brain by extension? It's a fair question and I really don't know the answer. Everything is interconnected at some level, so then would the spine and nervous system also be considered part of the brain? If the cranial nerves are truly considered part of the physical brain, than an AN would clearly be a tumor of part of the brain and I would concede my previous point. It is a bit of a stretch for me, but I couldn't dispute the point you make. I shall ponder it with a glass ( or two) of wine tonight, which BTW will affect my cerebellum  ;D

mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Gennysmom

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Re: the stupidist thing people said....
« Reply #111 on: March 24, 2006, 06:56:24 pm »
OK, now I had to go to Webster's just to satiate the curious.  Not sure if it really answers the question, but does say enclosed in the skull, as the AN is.  Continue on with your drinking, I will join you soon!

Main Entry: 1brain
Pronunciation: 'brAn
Function: noun
Etymology: Middle English, from Old English brægen; akin to Middle Low German bregen brain, and perhaps to Greek brechmos front part of the head
1 a : the portion of the vertebrate central nervous system that constitutes the organ of thought and neural coordination, includes all the higher nervous centers receiving stimuli from the sense organs and interpreting and correlating them to formulate the motor impulses, is made up of neurons and supporting and nutritive structures, is enclosed within the skull, and is continuous with the spinal cord through the foramen magnum b : a nervous center in invertebrates comparable in position and function to the vertebrate brain
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Karla83401

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Re: the stupidist thing people said....
« Reply #112 on: March 24, 2006, 07:23:12 pm »
oh my did somebody mention a couple of glasses of wine!!??? If there is wine involved then I certainly think that we should all sit down with a glass of fine wine and discuss if our tumors are brain tumors or not. Perhaps if we are not able to come to a consenus with one glass, we may have to  have two glasses. Speaking for myself strictly, I am a cheap drunk so if we discuss it long enough it won't matter to me if it is a brain tumor or a toe tumor..lol

I personally think that I will stick with the wart idea when talking to other though

You guys are the greatest medicine!

Karla
diag. 2/23/06 left side
4x8x6mm bony area
1.4x.1.1x1.1cm brain area
waiting for surgery in May 06

Battyp

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Re: the stupidist thing people said....
« Reply #113 on: March 24, 2006, 07:51:30 pm »
I"m so confused with this conversation I'm going to have a whole case of wine to ponder it all  lol ::)

Captain Deb

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Re: the stupidist thing people said....
« Reply #114 on: March 24, 2006, 08:03:09 pm »
Jeez, me too, Batty!  I'm havin' some dark chocolate. I had a salad for lunch, to I can now have a third of a chocolate bar as a reward---OH
Back to the thread--I old someone once that to get the tumor out the docs had to severe my balance nerve on the left side and her response was--"Well, can you sue them for that?"
Captain Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Karla83401

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Re: the stupidist thing people said....
« Reply #115 on: March 24, 2006, 08:08:13 pm »
Now that sounds like a great combination, wine and chocolate.....who knows if ponder just what exactly these tumors are and come to a consensus maybe we will have to celebrate with something really crazy like a mixed drink...

Karla
diag. 2/23/06 left side
4x8x6mm bony area
1.4x.1.1x1.1cm brain area
waiting for surgery in May 06

Captain Deb

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Re: the stupidist thing people said....
« Reply #116 on: March 24, 2006, 08:28:15 pm »
I heard they have someting now called a chocolate martini!  Too bad I quit drinking!
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Karla83401

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Re: the stupidist thing people said....
« Reply #117 on: March 24, 2006, 08:37:01 pm »
Well Captain, being the good deck hand that I am, I will try the it for you and let you know how it was lol

Karla
diag. 2/23/06 left side
4x8x6mm bony area
1.4x.1.1x1.1cm brain area
waiting for surgery in May 06

Captain Deb

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Re: the stupidist thing people said....
« Reply #118 on: March 24, 2006, 08:39:36 pm »
OH YEAH! Such a good little crew-wench ye be! Such Sacrifice!
CD 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Desilu

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Re: the stupidist thing people said....
« Reply #119 on: March 24, 2006, 09:43:51 pm »
My three cousins flew in from California to see me after my surgery. They were staying at a local hotel. I drove over to meet them in the hotel lobby. When I saw them, I greeted them by name and gave them all big hugs. My oldest cousin ( in his 60's), said "the surgery must have been a sucess, she can still remember who we are!" Some people just don't get it! Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger