i am new to this message board and have tons of questions. our daughter has moya moya and had surgery at age 10 in 1999. she has had numerous health concerns over the years,the most recent being seizures. they started as blank stares,forgetfullness,confusion and rapid eye movement. she just had an episode of loss of conscience,disorientation and inability to move any part of her body. hence my 1st question...has anyone else experienced seizures after surgery???

Hi Brandi, Welcome to our MM family

That’s why we’re here, so feel free to ask all the questions you want and we’ll do the best we can to help. There are some wonderful people here who have been down that road you're traveling. Although, before we can answer certain questions, we would need some specifics from you. You said that your daughter had MM surgery, but did she have surgery on both sides?? Does she have follow-up testing yearly, like an Angiogram, SPECT, MRI?? I ask this because seizures are also a sign and symptom of MMD, so if she did NOT have surgery on both sides, it could have progressed to the other side of the brain, as MMD does, and follow up testing would detect the progression.

You also just described not only seizures, but also signs of MMD and TIA’s, which is very serious. I would get her to a doctor for some testing immediately to start getting some answers.

As to your question, has anyone else experienced seizures after surgery???  Yes, people do experience seizures after surgery, and many take medication for it, but I can’t say it is common if it was sudden, after 8 years. It’s tough to answer any questions without knowing your daughters specifics, but from what you described, whether it’s seizures or TIA’s, it’s should get immediate attention, IMO.

Please keep us posted and know I’ll keep you and your daughter in my prayers.

Mar

I'm wondering about seizures to.My daughter Jennifer had surgery in 2000 on both sides and has never had any problems at all.She had 2 children.Last week she had a seizures at home and one when she got to the hospital.They checked everything out and her surgery looks good just like when they did it and did a test on her brain for 24 hours.The problem now she is doing things that are not normal at times but knows us and everything that has happened for years.Have any of you had this.I'm hoping it was just the seizure and she will be better soon.
Carol

HI,
I know this a long time since the message was posted.  I also have seizures post surgery.  I get a creaping numbness that starts in my right arm, then goes to my right side of my face and makes me unable to be co-herent just for 10 seconds or so.  If I keep my mouth shut no body would even no I was having a seizure.  But sometimes I am on the phone or in the middle of a conversation.  My family knows if I put up my finger, means just wait a second I'll be right back.  I am taking seizure drugs right now, which have helped.  It sounds like your daughters seizures are more advanced.  What does the doctor say?  Did she develope them right after the surgery or later.  I hope her health concerns get better.  I am old and can cope, but she is young and it must be hard on her.  I am anxious to hear what came about after this was posted.  Good Luck!