Replies to This Discussion

ModeratorPermalink Reply by Barbara H. on May 21, 2011 at 8:58am

Hi Christine. My almost 86 year old father always says a day above ground is a great day!!!  I am so glad that you do not have have have screws in your head!!! I am sending positive thoughts your way!

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ModeratorPermalink Reply by Louisa on May 21, 2011 at 9:13am

Hi Christine..Will you still have Proton Beam Radiation at UCLA?  Your AVM situation sounds exactly like mine..it was too far in the back of my brain that Proton Beam Radiation at Mass General was the only thing that could be done.  Knowing that there is something that can be done is great news!  Keep the Faith. 

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Permalink Reply by Xtinnnne on May 21, 2011 at 10:47am

Hi Louisa, actually its not going to be proton anymore. Loma Linda is the only place that I know of in California with proton and they cant seem to pull their heads far enough out of their butts to do my raditation so now that Im at UCLA its still steriotactic radiation but it called a Novalis machine and it actually targets the AVM or brain tumor whichever you have so no screws or anything have to be put in your head and it doesnt destroy anything important up there, Thank you for the faith!

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ModeratorPermalink Reply by Ron, Kansas on March 31, 2012 at 6:48pm

Hi Xtinnne,

Curious how the Novalis machine holds your head immobile and targets?

When we had stereotatic Proton Beam Radiation at Loma about 1996, they used a bite block, not screws. We did the screws as Mass General for PBR in 1992.

Ron, KS

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Permalink Reply by Xtinnnne on April 1, 2012 at 8:00pm

With the Novalis machine they make a mask for your face that gets screwed down to a table and that is what holds you still for the procedure. The machine itself is specialized to target the area in your brain or body that when they put the information in the machine it only radiates around that small portion and doesnt destroy the tissue around it.

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Permalink Reply by Kat Sanders on March 31, 2012 at 4:45pm

You have to look at ALL the positive things when you're faced with an AVM! I live in Corona, but am moving into a retirement community in Menifee since I had to go on disability after my bleed & brain surgery almost two years ago. But I'm still close if you need anything.

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Permalink Reply by Xtinnnne on April 1, 2012 at 8:00pm

Thank you Kat!

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