Jaclyn had Linear Accelerator (she’s 13) in April this year and has now had her 3rd grand mal. She had 2 Gamma Knife radiosurgeries prior to April and never had a seizure in her life. (Well, not grand mal’s-maybe small contained ones that were not noticed) She (we) are so frustrated…this time it did happen during a soccer game in the middle of a huge tournament 2 hrs away from home. We were taken off the fields in ambulance and the cat scan revealed no bleed of the avm but did show brain swelling again. So apparently she had swelling already and the exertion from running during soccer triggered this grand mal. Totally sucked b/c this time it was infront of 2 soccer teams and parents. She felt it coming on so she pulled herself out of the game but within minutes she was in a full fledge seizure. Luckily, my husband was on the sidelines helping coach when all this started. I was alerted she was ‘down’ and shortly after her saying to me ‘Omg …I feel really aweful’…I ran to get medical attention. We were discharged about 11pm that night and luckily had a hotel already booked in advance for the tournament. She is getting stronger as the day goes by but these grand mal’s kick the crap out of her. We have an appt this morning with her neurosurgeon at 10am.
Also, I apologize to those who have emailed me @ ■■■■■■■■■■■■■■■■■■■■■■■ to order your bracelets and I have not gotten back to you yet. It’s been a rough couple of months. I will get back to you today since I am off from work for her appointment.
Thanks for listening and have a great holiday week!
Been there,had one at work went in to show off how well I was doing,bought me another wonderful night in intensive care.
Sorry all of this is happening. Don’t feel you need to apologize about not feeling positive. I would have a rough time of doing that myself. Hope today’s appointment gave you some reason for being positive. You both try to have a Happy Thanksgiving.
Kim, sorry to hear about this, but very happy it wasn’t a bleed. How’s Jacyln feeling now?
Oh, Kim, I feel bad for Jaclyn that it happened during her tournament…but it is a good thing she could feel it coming on and get out of the way of danger.
I admire you. Please remain strong.
Hi Kim, so sorry Jaclyn is having to live with this. I can imagine how you’re dealing with it too. I’m 51 and had never had seizures in my life; till my aneurysm in 06. Then they started; no warning at all,went for a year with them on a regular basis. I even had one in my Horticultural meeting. Trust me from what I was told; meeting ended quickly. I don’t think people liked watching me flopping on the floor, like a fish out of water. Had +6hr. surgery to remove AVM(frnt left lobe) in 07; almost a year after bleed. Dr. couldn’t get it all; so I still have Gran Mals. So far this year I’ve had 3. They figure I’ve had about 150, plus mini stroke which is OK now, but I still have balance issues, my head nods; no on it’s own; if I don’t pay attention, my r-hand flicks. I even just about blendered my left 3 fingers off; when making pesto last fall. Trust me I do know better than putting fingers in the thing. I was adding basil in, when my right hand flicked hitting the button. I’m sure the neighbors heard me yelling for my spouse. I’d minced them so bad, Dr. had to stitch thru the nail. Surprising how our body does heal. Somethings anyway. For me I’ve had to change my attitude to this being somewhat funny; now. What else can we do? feel bad all the time. My grandpa & dad both passed with brain bleeds. I can’t let this AVM be who I am. It’s what’s happened to my body, not my spirit. I have faith, for good coming. If anything it’s nice to be here, and finding others that understand.
Thanks everyone for lending your support. The appt at her neurosurgeon on Tuesday was pretty eventful. I went in there with an attitude already because she had been having some ‘issues’ earlier in the week but they would not prescribe steriods at the time. Well, 6 days later, she has this all out seizure that I feel could have been prevented if she was put back on steriods. Anyway, today is Saturday, a week later and she is feeling just ok. The steriods seem to be working opposite than expected as they are making her very tired and just feeling… ‘blah’. We recvd a certified letter in the mail yesterday stating that her EKG from the out of town ER showed an ‘abnormality’ and to call them right away for the results. Well…we called and they have no idea what the ‘abnormality’ is b/c they sent the EKG to another hospital that they are affilated with as they specialize in peds for it to be read and no one can give us the reason ‘why’ we were sent this certified letter and what the problem is. We should get some answers on Monday and we seem to be chasing a wild goose! Hopefully it’s just all a big mistake and maybe we just need to re do another EKG. I’ll give you an update next week. Thanks again for listening! Kim-Jaclyn’s mom :0)