Its was a long, stressful, draining day. First and foremost I would like to thank my best friend who was by our side today and managed to bring humor and laughter to us..thanks jenny you kept us strong and we couldnt have been without you. Before our apppointment I prayed to my mom and auntie to somehow give me the strength to stay strong, not cry, put my advocate hat on and step away from being a mom for a little while. I got in the room with the doctor and felt a calmness come over me and I was just able to do it somehow so thank you also for my answered prayers. It was definately a tough appointment with a lot of information that was thrown at us. The outcome is that madison will face two procedures in the near future. We decided to have an angiogram done prior to any treatments. This will allow us to know exactly what we are dealing with...where the main feeder arteries are as well as the center of her avm. We will also be able to tell if the avm is wrapped around the wisdom tooth. Madison will need to be at childrens for the day, she will be put to sleep they will enter her groin and go up to her face they will inject dye so that they can get clear images of all of her arteries and nerves. When she is in recovery she will need to keep her leg still for 4 to 6 hours (she said this is the worst part for her). She will come home that night and take it easy around home the next day. We will review the images with a team of doctors and decide what agent will be used in her treatment. They believe they will use onyx to stop her blood floor to allow them to remove the tooth. They were honest that this is not a cure. But may give her enough relief to make it through her highschool years. At least that is our hope. The second time she will be in the hospital for two days she will have an angiogram and embolization with onyx on day one and on day two the tooth will be removed. This is certainly not where I wanted her avm journey to lead her too but this is the beginning of her journey and she is comfortable with the decisions she made today. I hope and pray they continue their research and that someday find an easier cure for these patients that have to deal with this dreadful monster...and so are avm journey begins........until next time...
Please tell Madison that I’ve had two angiograms and they aren’t that difficult…Waiting for me being next in line was the most nervous moments, but once I went in, the team made me laugh and stay strong! I slept for most of the 4 to 6 hour when you have to stay still. Next thing…I was told I could go home. Yehhh! What I did with my AVM treatment was take it a day at a time. I will pray for Madison to be strong!
Like Louisa, the waiting to go in is the worst part! I’ve had about 5 angiogams, with another due on 12th Nov, and truly, the people in the team are great. They kept me busy by talking and laughing and I also slept most of the ‘being still’ time. Take care and my thoughts and prayers are with you & Maddsion. xx