The Final Decision

So, my biggest fear came alive just an hour ago, after speaking with my neurosurgeon.
They will not do more embos and it is far to big for gamma.
I was told that I will become 100% permanently paralyzed on my left side if they did more.
They will not refer me to a second opinion in another country.
This is final.
I will have to always live with this monster and just hope for the best.

Why have they not told me this before?
Since June 2008, I have been living with a hope that I one day would wake up without an avm,
at the same time as preparing myself to be paralyzed two more times.
I feel totally exhausted.
How to cope with this now?

hanne,
dont ever lose hope…i remember hearing those words myself from 10 surgeons here in australia…who refered me to one another…but i refused to give in…i got on the net and started reseaching myself…and refered myself to a neurosurgeon …who ened up removing my so called inoperable avm and saved my life…dont give up …keep faith and always believe…one thing i have learnt is sometimes in life the only person out there to help you is you…so dont lose faith in yourself and keep searching you never know what may happen…dont let go of hope…hope gives you strength to keep going when you feel like giving in…dont ever quit believing in yourself…as long as you believe you have reason try…sending you lots of positive energies hang in there…always here for you xoxox

DEAR SWEET HANNE, AS OTHERS HAVE TOLD YOU, THERE IS ALWAYS HOPE. BUT IT’S SCARY, NO DOUBT; WITH EVERY STRANGE FEELING, HEADACHE PAIN, OR NEW SENSATION, YOU WONDER, “WHAT IS HAPPENING”?— IS THIS BAD"? "AM I GOING TO DIE NOW?

THERE IS ANOTHER NON INVASIVE SURGERY CALLED PROTON BEAM RADIATION. IT IS OFFERED BY A TEAM OF DOCTORS LED BY CHRISTOPHER OGILVY AT MASSACHUSETTES GENERAL IN BOSTON, MA USA SOMETIMES THE PROTON BEAM HAS GREATER RESULTS FOR THOSE OF US THIS LARGE AVMONSTERS DONT GIVE UP— JILL

Hanne, please do not despair. There are options if you wish to seek them. If you do not want to risk the consequences, then I know you are strong enough to learn to cope. I’m not sure what the answer is, but we’re here for you. That much I know.

Thank you all for being here, it is moments like this I realize how much support this site can give :slight_smile:

There might be options out there, but that do not help me as long as they are not in this country, that is maybe what is hardest to cope with, just now!

I am trying my best to not let these news break me down but even so, I find it really difficult to concentrate on my studies and carry on as usual just now.
I know I will manage to return to a coping state one day, but at the moment I am flowing on emotions as long as it takes.

I know the key to return is positive thoughts, so I am constantly searching for them.