In 2003 I was diagnosed with a right sided cerebral avm, 4 cm (considered to be large) and in the temporal/parietal part of the brain. I am 27, and the avm is unruptured, however, I have had severe migraines since 2002 that were preceded with an aura of complete left body numbness that traveled from my left arm, up to my face, and then down to my toes, followed by a 12 hour severe migraine, the only thing that helped was sleeping off the pain and vomiting until the pain went away. I had these every few months, then as I grew older, the migraines became more frequent, and at age 19 I was started on migraine preventative medications, I tried 10 in total, one after another, from 2009 to present. I did research on botox for migraines, and asked to be referred to a neurologist to try botox for migraine prevention. This neurologist has a high success rate of 80% in the reduction of migraines, so I am very hopeful. I have had one treatment so far (31 injections in the temples, forehead, occipital area, neck and shoulders), and need two more treatments 3 months apart to know for sure if botox will be successful for me. Has anyone else tried botox for migraine prevention and what was your experience with it???
In addition to the daily migraines I have experienced this year, I also had my first partial & grand mal seizure in August 2016, and also had 3 more seizures in one week (two weeks ago – Dec 4 to 10, 2016). All of these seizures were preceded by numbness and shaking in my left arm and a severe migraine. I was with my fiancé during all of them, but it was still a traumatic experience for both of us. I had CT scans and an MRI and the avm is unchanged and stable (knock on wood it stays that way). Since I have been on Disability since April 2016, I am at home alone a lot. I am wondering if anyone has any tips or coping strategies to dealing with seizures and/or the fear of having a seizure.
The neurosurgeon I am seeing does not recommend surgery at this time as the risk for paralysis on my left side of the body is 100% chance it would be temporary and 30% chance it would be permanent. These risks were the same in 2003, as is the same risks now due to the avm being inside and around the brain tissue. And as I do not have any physical deficits right now, and I would like to return to work at some point as a Registered Nurse… surgery does not look all that appealing.
Any comments are appreciated.