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AVM Survivors Network

Confirmation

Just received a call from Dr. Spetzler’s office. Morgan has a very alrge diffuse avm which is inoperable. I can’t bare this as the only hope is now rolling the dice of 2-4%/yr. I am sorry to share the bad news. Thanks for all your support.

tony,
never give up hope…get other opinions…i too was diagnoised as inoperable after being diagnoised with a massive 12.5cm avm with large deep feeders…it was on the verge of bleeding with several anurysms present…and prognosis wasnt good …i wasnt given much longer to live…but i rufused to give up hope and i kept getting opinion after opinion…it took me 12 opionions of hearing no nothing can be done enjoy what you have left …until on the 13 opinion i was offered a second chance at life…dont give up yet tony…never give up…if have reason to try…believe and never give in…you and your daughter are in my preayers …sending lots of positive energies your way to help you through this journey…stay strong…keep positive and keep trying xox

Tony: I am so sory for the news you received but you need to keep going to other drs. My dr. told me the same and I am hopeful that a dr. I saw last week might be able to help me. As this dr. said go out all over the country to find hope. I am seing someone in Philly and he’s suppposed to be pretty awesome. I will keep you in prayer but never give up hope. You are such a great dad to be such an advocate for your daughter. Morgan will be in my prayers on my journey too. THis is a great place where we truly feel your pain but also look at all the miracles. Morgan will be one, think positive and again, keep getting other opinions. I am here if you need anything. Mare

Tony! So sorry you didn’t get better news. There are medical advances every year, so don’t give up hope. Your daughter is very young! The chances of a new treatment during her lifetime are HUGE! Hang in there, and our prayers are definitely with you and your family.

I was also told that nothing could be done. I was also told that i was in good good of shape and they if they could they would not fo it … He said i would never walk again never feel my rt said have trouble talking. This DR had scared me to death. It real ugly before it got better… Then in 2005 DR MATHEW HENRY IN KS was put into my life said this was a walk in the park and tiday i Dont feel my right side but i can walk talk ( never shut up ) and its out …

So my friend what i am tryiing to say is have faith, never say never. Dont stop at one dr. keep lookin.
your family are in my thought and prayers. p

Thanks for the encouraging words and hopefully I will be on the giving end of it sometime soon. I will never give up!! I did some great reviewing of recently published medical journals (ARUBA) and there is great indication that unruptured AVM’s may only have a 1% chance of hemorrhage rather than 2-4%/yr. It also says that large AVM, have less liekly of rupture than small. How contrary is that?

Thanks to you guys it has been easier to fight on. I am leaving town and hopefuly will come back rejuvenated.

Tony,
Can it be glued closed? That’s what they did for my spinal avm.
dale

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