The countdown has been lengthened!

I want to thank those of you who commented on my last blog. I appreciate your support and insight so much. I have to let you know that today my neurosurgeon called and has postponed my surgery until the 3rd of June. It was disappointing and upsetting but when I got through the tears and the emotions I realized that it was not that bad.The surgeon has told me all along that this is a difficult case and reiterated that to me today and explained that there was a specific person that works for the maker of Onyx that needed to be there for my surgery. So although I feel like there have been many setbacks and rescheduled appointments and such that this is all a part of Gods and plan. He has the specifics worked out for me and is making sure that everything goes according to his plan. I will have to learn more patience and just continue to be open to living every day to the fullest. God bless you all!

Patience is key! Don’t let any of the set backs from your journey get you down. They are disappointing even frustrating, but everything happens for a reason. God bless you dear. My prayers and well wishes are always with you.

Hi Kelly, My son had an embolization on May 18th and they were able to get 80% of the AVM. He is a difficult case too. He is doing wonderfully! He did have a very weird smell and I initially could not figure out what it was. I was smelling all over the room and then would come back to Trevor and there would be the smell. Later the doctor was in the room and he told me it was the Onyx. It was very faint by the next afternoon but it was still there. Trevor did not experience any headaches but definitely was pretty tired the first few days. Wishing you all the best. I know waiting is so difficult! Hang in there. I keep reminding myself that it is a marathon not a sprint.

Hello Kelly,
Just know people do care about you and are praying for you. One of the toughest parts is not having control over your situation. It sounds like you are in good hands and you will be well taken care of. Have faith and God bless you!

Hi Kelly,

I can totally sympathise with the patience and waiting you’re talking about - I’ve found it the hardest thing in a wierd way. Is it the embolization you’re waiting for or the craniotomy? Embo by the sound of it if you’re talking oynx. I’ve had three of those so far and recovered very well after each, so it’s not as bad as I initially thought at all. Sending best wishes to you and wishing you lots of luck. Erin.