Hi there! My name is Celeste and my daughter has an AVM on the left side of her brain in her sensorimotor. She had two Grand Mal seizures in November 2015 that brought us to this conclusion. She is 23 and just graduated from college! Yay! Before the seizures she was experiencing numbing on her right side. Mainly in her hand, leg and foot. Also had some nausea and headaches. Three days after the seizures she had an angiogram. The AVM is approximately 3 cm. We live in Fayetteville AR and had a neurosurgeon here who has been watching her progress this whole time. His approach has been to repeat the angiogram each year to look for changes. So far she has had a total of three. She was put on Keppra from the beginning to control the seizures and about four months ago her neurologist added Lamotrigine. Even with both meds she still has small “episodes” or seizures. They consist of the numbing/tingling that she felt before the Grand Mal’s. Two months ago we learned that her neurosurgeon was moving to Kentucky. We have found a doctor in Dallas at UTSouthwestern. His approach has been just the opposite of her first doctor. He feels he can do surgery with minimal deficiencies on her right side. One thing he did mention was doing a functional MRI before anything is decided. We have never heard of a functional MRI. But he does not like doing angiograms due to the risk of stroke. He mentioned Gamma Knife, embolization and radiation.
We are scared. Scared to do the surgery but scared not to. Will she gain back full use of her right side? The “what if’s” eat you alive! I know that we have to make all of these decisions but we feel so alone. He has told us the risks if she doesn’t have the surgery. I just want her to be able to live a normal life. To not have to always worry about a rupture. To be able to have children. Her friends don’t get it…heck, our friends don’t really get it! Can anyone tell me about the days and weeks after surgery. What deficiencies did you experiences? Has anyone not come back 100%? Sorry I am going on and on…I think this is why it’s taken me a while to introduce myself. I have so much to say and just don’t know how to get it out! Thanks for any information you can give.