On Monday, 09.24.15 I had an appointment with my neurosurgeon and interventional neuroradiologist. Because there is a 99% chance that my AVM is located in an area of the font left lobe of my brain where, if surgically removed, there is a huge chance I would be left paralyzed on the right side of my body; my doctors have told me that my best option is embolization and then a few rounds of pinpointed radiation. I now have a date set for embolization - 10.06.15! Prior to the embolization I will get a Functional MRI which will show if surgical removal is at all possible. I am happy that this is all happening quickly because I am 31 years old and although I was told that there is only a 4% chance of my AVM rupturing, I believe that it is too risky to just monitor the AVM. From what I understand, if it ruptures I will most likely lose all motor skills on the right side of my body. So on 10.06.15 I will go for a second angiogram. This time they will add anesthetic to my brain. If my body reacts ok to the anesthetic, right then and there they will embolize the AVM. If surgical removal is possible, this will be done next. If it is not possible, I will have to go for 2-3 rounds of pinpointed radiation. Then I will have to go for numerous MRI's over the course of 3 years to monitor the AVM and be sure that the embolization and radiation kills the artery.
Please keep me in your thoughts and prayers. I will be sure to keep everyone updated on what happened and what will be happening next.
In the meantime, I am going to start reading everyone else's stories. I am eager to learn more about AVM's and hope to get involved in spreading awareness of this rare disorder! On Wednesday, 09.30.15 my sister is hosting an AVM Awareness & Support Julie Event that is endorsed by The Joe Niekro Foundation. For more information, please visit the event page on the Joe Niekro Foundation website.
If there is anything that I can do to help anyone in any way, help spread awareness, etc. please contact me.