Wanted to share a quick update on last week’s visit to Cincinnati.
Luke had another angiogram on 9/29. It showed new Transdural AVM recruitment with a small choroidal AVM identified. His neurosurgeon believes that radiosurgery is the best option for this development. He said it is a very small vessel and should only require one treatment so that is what we are hoping for. It’s hard to say exactly why this happened. He had a very deep and large AVM with intertwinement of normal brain tissue. It was initially considered inoperable but after many discussions and second opinions it was decided to move forward with the surgery. We still feel blessed to have found this before it ruptured, especially considering they encountered two flow related aneurysms that he was able to remove during surgery. Although, it was very hard to hear that he has had a recurrence we are hopeful that we can stay in front of this and radiation will be all that is needed now.
Luke is doing fairly well. He did start having frequent headaches when school started back in August and he has had one seizure last month which was a new onset for him. He is currently transitioning from Keppra to Trileptal due to having issues with depressed mood and increased frustration on Keppra. He is staying involved in baseball for now as long as he can tolerate it and still has the desire to. We will just keep moving forward. This is not a straight road and hopefully it is just a bump in the road to defeating this monster.
Luke had his CT simulation scan where they fitted his mask and they want to do his radiation in about 2-4 weeks. We are hoping for complete obliteration and praying for no adverse side effects.
I hope to share good news about his progress. We are all on an unpleasant journey with these AVMs but I am still so thankful to have the support from all of the survivors here.
Many thanks,
Brandi