Hi, I'm Noid. They think I have a low grade Glioma.

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

I'm new to this. Originally I went in for my migraines which are also new. Since I was 19, I've had a twitch that makes me jerk to the right. I have trouble remembering things. I throw up every morning, and I"m dizzy most of the time. My head feels like it's full of water and too heavy for my neck to lift. I was diagnosed with Asperger syndrome as a child, but from what is being found out, it appears as though someting more sinister has been going on with my body. My doctors are pretty sure it's the beginning of a glioma. I have smaller ones as well, but the image I'm adding only shows the big one..which isn't that big yet. I'm trying to switch to organic foods and all,but other than that, I don't know where to start. My doctors are just doing a series of mri's atm to see how fast it's growing. We thought it was MS at one point, but they did an enhancement on the image, and reclassified the White Lesion as a definate mass. Sad

It isn't that large yet..which is good news. Anyone here with a glioma??? I had never learned about any type of brain tumor, as I figured I wouldn't get one Embarassed

btw, nice to meet you all. I borrow my computer, but will pop online as much as i can.

These are the MRI's of my head. As you can see, the mass isn't that large really. It does cause me alot of symptoms that have gotten worse recently. My doctor says my symptoms match those of a brain tumor. As small as it is, I wouldn't think it would cause me this much grief.

http://i137.photobucket.com/albums/q217/Noiddestroyed/head2.jpg
http://i137.photobucket.com/albums/q217/Noiddestroyed/head1.jpg

brainman

Hi Noid,

Please read my story. You will find a link to it in my signature block. Just a shorter version of it... in 1992 I was diagnosed with an astrocytoma grade II (an astro is one of four gliomas). I have survived for almost 15 years since diagnosis. I did have a recurrence in 2005. At that time, it was said to be an oligodendroglioma grade III. Pretty much, all gliomas are about the same. The glial cells are the structural cells of the brain as opposed to the neurons which are the tree-like "thinking" (for lack of a better word) cells. As the glial cells start to duplicate out of control, they do put increased pressure on the neurons which they support. What is most important is the grade, size, and specific location of the glioma.

In 1992, I was 38 years old and the doctors said that the tumor could have been there since childhood in a benign form. Looking back, I have had violent "twitches" seen my teen years. I always associated them with a build up and then release of tension due to anxietyl. But I do not know anymore.

Continue to work with your medical team to try to identify this mass. Please, feel free to ask us any questions you might have.

You have in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

Thanks for the reply Jim. Reading your story taught me alot and also gave me some hope. It is refreshing to see people with brain tumors living normal..as normal as expected..lives. I'm still trying to learn more about what is going on with myself, and this site has been very very helpful. I hope you get some good news in the near future, and I will stop here as frequently as I can. My family is here arguing around me while I'm trying to type so for now I have to go. I don't get much time to think where I live. People are so hyper and annoying, but until I can get well enough to get my own place..i live in a madhouse. Off for now, but be back soon.

brainman

Noid, take it from someone who does live by himself... it is not as "fun" as it might sound. What I would do to have a house full of noisy people Laughing

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

It's my adopted family Laughing

My real family isn't around anymore. As annoying as they are, I adore them. I just wish they'd leave me alone once in awhile sometimes Rolling Eyes

brainman

You do need some "space" of your own. Try to set aside some "alone time" for your own mental health. It might be going out to a park and sitting on a bench or to a mall during the winter months. It might be going to a church during a weekday when the sanctuary is empty. Or it might just be telling your adopted family that for this time to that time you want them to leave you alone Smile

. You might have to fight for peace Laughing

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Knit4Brains · Regular Joined: 16 Oct 2007 Posts: 14

Noid, for me getting a diagnosis was very freeing - even though the news was considered "bad". I no longer worried night and day over what was wrong, what was in there. I wish you success in obtaining a firm diagnosis so you can make decisions on where to go from here.

Having people who care but who don't crowd you is a precious commodity. Two phrases that have gotten me through the last 16 years:

1. Okay, thank you.

2. Thank you, but no.

The first one is hard sometimes, but I say it because they need to hear it. They need to do something. They need to feel needed or helpful or just less awful. The second is the hardest. Repeat over and over and over. Don't elaborate. Look them in the eyes. Thank you, but no. Use those words. Practice them out loud until it always sounds the same. Your family will recognize that tone and realize that you mean it. It works.

Some of my family have taken to using my phrases back to me. Sheesh.

Hope you get your news soon and your family learns to chill.

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

Well, today my doctor began, without a biopsy, referring to my mass as a glioma, as they believe they rulled out ms, and lymes has been ruled out long ago. She said it looks like a low grade glioma, acts like one, so for now, we need to assume it is one and act accordingly. I go to consult with a neursurgeon next month..date not set yet...I guess only time will tell really.

And I know a I need time alone sometimes. I would feel so empty without a prying family who cares about me though. Without the bickering it wouldn't feel like home. Laughing

I was put on xanax today, so i'm sort of woozy and going to play my sims 2 for awhile. It's a great game. Check back soon.

Noid.

Knit4Brains · Regular Joined: 16 Oct 2007 Posts: 14

Sounds like you're on the way to getting your ducks in a row. I'm so glad things are chillin' with the folks too.

Since I went through this recently, I know how hard is is to decide to let someone into your head. If you decided to have the brain surgery, it's blasted impossible to keep track of all the appointments and calls. I can offer two suggestions:

1. Get a divided notebook and write stuff down. Now.
2. Call your insurance company and request a case manager or nurse manager or whatever equivalent they have. Then you can deal with that person and they can go to bat for you. Saves LOTS of headaches you didn't even know you were going to have.

I zone out with a favorite game too when stressed. Lately it's Zoo Tycoon or Snowy Lunch Rush/Puzzle Islands. (I love me some little white bears) I've always wanted to try the Sims too. Sounds like another good stress buster.

Keep us posted.

In

Noid. Sorry to hear about your health- but sounds like you have a great attitude.!

Keep up th positivitie and feel free to abuse family once in a while- I used the "i have cancer you know" Wink

lol.

Anyway. Take care and good luck with Specialist.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

Ahh..I love the sims 2. I've just figured out how to make custom skins and everything. I was a pro at making objects and skins for the first sims. This one is a little trickier with the objects. I like the fact that they can become vampires or mate with aliens in this game, plus they have kids that posess the parents genetic make-up.
Ahh..enough about the sims. I had a really good weekend, and hardly felt sick at all. Today i feel like my old self, almost as if the pressure in my head isn't there at all. First I've felt like this in over 6 months. My hearing in the right ear is still near gone, but even my vision seems better. My doctor just put me on Xanax for the twitches, and they are nearly gone..well, almost. They aren't as frequent, and mostly only at night or early morning. My headaches disappear before noon more often too. Usually I'm useless until 2 pm. Perhaps i'm gleeing in false hope, as I've been warned i may have "good days" because of my meds, but who cares..it's a beautiful day. I'm gonna go rake some leaves Razz

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

[quote="In"]=

Keep up th positivitie and feel free to abuse family once in a while- I used the "i have cancer you know" Wink

lol.

[/quote]

I think that quote thing worked..anyway, that part of what you said just cracked me up for some reason. Laughing

Most of the time I try to make them forget. I'll pull that one when I feel like i want to hit them or something. Thanks for the tip.

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