My 10 year old daughter has had seizures and “episodes” for 6 years now. Back in March she had an episode/seizure and finally got her AVM diagnosis via MRI. About 2.5 cm in right temporal lobe. No meds to this point. Today she couldn’t see and “lost her vision” at school. Rushed by ambulance to ER. They are saying we may have to have anti-seizure meds now. Her angiogram is 6-16 and the doctor at Johns Hopkins says surgery or Gamma Knife are the 2 treatment options, but that one must be done. Any insight on meds? Treatments? Advice? Thank you
I'm so glad you pushed an finally got your beautiful daughter a MRI, seems like with her seizure history they would have done that sooner. Those seizures are very frightening for all! I'm sure the neuro doc will put your daughter on a med he thinks will be appropriate for her type of seizures. Warning though it may take a few drugs to find one that does well to control them but also so your daughter can tolerate any side effects. I will be thinking and praying for you guys please keep us informed. If you are not already a member you may want to check out the "childrens" group, many parents on there will share their ideas and stories.
Just a hello. I have an unruptured AVM in my right frontal lobe and am also being treated at hopkins. All I can say is ur in very good hands at hopkins. Your daughter will be taken care of by a team of some of the best specialists and neurosurgeons in the world. That team will develop a treatment plan that will best help ur daughter. I just had my first of three embolizations done on june 1st. Had to spend the night in neuro ICU after the embo and was released the next morning. Good luck with her angiogram on the 16th. Once it is done the drs. and you will have very detailed images of the AVM which will guide them in what treatment methods they will use. She is in great hand at a great hospital! Stay strong and try to be patient. These things are not treated over night. Best of luck to her and your family:)
Yep, they’re right. Both my husband and his mother are on keppra (read my latest blog entry for an explanation), and both of them tolerate it just fine. My husband will probably be able to staop taking it in about 6 months.
Tamargo’s great- he did my friend’s cranio for her aneurism 8 years ago and she’s doing great these days. His partner, Dr. Huang just did my husband’s cranio- also successful. These guys (and gals) are the pros. We’re very lucky to live where we do. My dad also had a cranio for an avm at Hopkins- back in the 80’s.
As far as which is better- cranio or gamma knife- each case is different-has to do with the size and location of the avm, etc. etc. Get a consult from BOTH a cerebral vascular neurosurgeon AND a radiological neurosurgeon and weigh the pros and cons of each.
But yes, as my husband said, it’s like the choice " between a sht sandwich and a toasted sht sandwich" (pardon the profane expression, but yes, he really said that). Ultimately he made the most obvious choice for his case, had the surgery, is on the mend and returns to work on Monday after being out for 3-1/2 weeks. (only). He’s doing great! We went to Artscape last weekend to see The Pie Tasters and Matisyahu and he was absolutely fine (wore a good hat, of course).
Best of luck to you guys. Your daughter is in the best of hands. For a relatively rare condition, these guys have seen and treated loads of them. Take care, Beth