I am still confused about whats going to happen after Luke’s surgery will he need to go on anti seizure medication or do they wait to see if he has a seizure first?
I’m over 3 years post bleed/crani. I was actually never told that seiuzures were even a possiblitily for me. I’ve never had one, thank goodness. I’m obviously not on any anti-seizure meds. I know that any time the brain is touched the possibility of seizures exists. I don’t know if your doctors will want to wait to see if your son has seizures or go ahead and put him on anti-seizure meds right away. I would check with your son doctors to see what they say. From what I’ve read from others on this site, it varies.
I know that a lot of people are put on the anti seizure meds automatically, and then observed and tested with EEGs to see whether they can go off. Part of the reason is that the risk of epilepsy certainly exists after brain surgery. The first seizure could be “the big one,” so many decide it’s better to be cautious. Another part is probably that a person can have seizures related to the post-surgical swelling, and just in reaction to what the brain went through–they might stop by themselves, but if they are prevented from happening, they can’t “teach” the brain to have more seizures. Another reason to be on the meds is that it’s really hard for doctors to sort out a seizure from a life-threatening postsurgical complication. Being on the meds simplifies the picture for the doctors so they can give the patient better care. (My husband had a seizure the night he came home after an embolization. When we called the surgeon, he said the seizure could actually be a surgical complication, so we needed to go to the ER. He had a series of tests, and a terrible night in which the ER docs misdiagnosed him with a bleed, transferred him to another hospital, and left him lying in bed waiting for emergency surgery, until his surgeon arrived and determined that nothing dangerous had happened.)
But I don’t know whether this is the usual thing that all doctors do, so you should feel free to call your surgeon and ask what will happen; it’s your surgeon’s responsibility to provide the info you need, and you shouldn’t hesitate to ask.
Hello Sam!
After I had my AVM bleed and craniotomy in Dec. 2009, my neurosurgeon placed me on anti-seizure medication (Dilantin). He said that it would be used in a preventative type of way because I still had some bleeding left over from even the second drainage they did after surgery. Having even a little bit of residual bleeding can aggravate the brain and can cause a seizure. I was only supposed to be on the medication for about 4-5 months after surgery but while doing therapy I had an EEG test done and they said that there was still seizure activity so I would still need to be on medication. They switched me from Dilantin to Keppra. Over the months I’ve had two more EEG tests done, which have all read that there is still seizure activity. I asked my neurologist why I still had to be on medication (aside from the obvious results of the EEG) when my neurosurgeon said I’d only need the meds for 4-5 months post-surgery and my neurologist said that the reason I still have seizure activity could possibly be because of the scarring of brain tissue from the surgery. They recently diagnosed me with “simple partial seizures” and because of this I am still on medication today. Every person’s case is different though. I’m giving you results of up to 1.5 yrs. after my surgery. As I said in the beginning of this response, from what I’ve heard and researched, they usually give the patient the medication after surgery in the first couple of months as a preventative method because the brain can be easily agravated from residual bleeding and swelling.
I hope this helps you!
SENDING MY LOVE TO YOU AND YOUR SON!
TRISH
Thanks Trisha i am just finding all this very confusing and still struggling to get my head round it all how 1 day you have a happy healthy little boy and next day you have a little boy battling a life threatening illness, I am one of those people who can cope with anything or so i thought this has really thrown me, i look at Luke sometimes and think why him xxx
Thanks i will get in touch with his surgeon xxx
Thankyou xxx
Hi bosco1
thankyou until we found this support group we felt so alone and helpless not really understanding Luke’s condition you get so many people saying everything is going to be fine and i really felt like saying how do you know have you ever gone through anything like this, that is why this group is so invaluable because you have gone through it or are going through it, we have found that our prospective on life has changed we now live for the moment because you never know whats round the corner luke is an absolute inspiration to us all how he is coping with what has happened to him it seemed such a long time from him having the bleed till his diagnosis but he has dealt with it with courage and we are so proud of him xxx
HI!!!
Thanks for helping your son and been around him on his journey. You have to be strong it is gonna be hard but family are the ones that keep us going.
I had my first seizure back in 1998, and Surgery on 1999. Since then I was prescribed and instruct to continue with Seizure meds 300 mg of lamictal. My neurologyst said that we have to prevent Seizure even though I only had two more seizure since my surgery. I hope this will help you with your concerned. Also it always help to talk to his doctor ask a lot questions
Do not hesitate Please until you feel comfortable.
Thank you and I wish you the best.
When Lindsey had her surgery, she was placed on anti-seizure meds just for a few days. The surgeon didn’t feel like the area of her AVM resection would leave her at a very high risk for seizures. He didn’t want to take a chance however, because a seizure immediately after the surgery could have very bad effects, so to play it safe he put her on them and she was weaned off before she even left the hospital just a few days later. She hasn’t ever had a seizure to this point. It would be a good question to ask your surgeon.
My understanding is that the anti seizure meds are issued after surgery because doctors assume the meds will be needed. Ask that Luke is tested once or twice a year (EEG, etc.) for a couple years following his procedure to verify that they truly are necessary. I was taken off my anti seizure meds about 5 yrs after my craniotomy because the need for them disappeared. Keep a close eye on side effects from the medication. About 2 years into my recovery the meds started causing annoying side effects and after many tests they found that the side effects were my body’s way of saying it didn’t need the drugs. My brain was healing itself and I eventually stopped having seizures.
Hi:
I had a couple of big seizures just prior to the AVM surgery. Now this was a long time ago, in 1959. I believe Dilantin was the only thing used then. I was on it for 10 years till I was 19. Dilantin may have caused a lot of physical problems which still linger today.
Then I had another big seizure when I was 35, and was given Dilantin again; but I was allergic to it. I am now on Tegretol and have been since then. I have optical seizures, meaning swirling lights in my right eye. I have no problem with Tegretol but it can screw up your liver. I do have a problem with seizures, meaning I do not like the experience. Not long ago, I witnessed a guy have a seizure, and it was scary. I never want to have one again.
I wish Luke the best, and maybe you will feel better knowing I am doing well, that I am 61 years old and still ride a bicycle - 52 years post AVM bleed and craniotomy.
beans
I think it all depends on where the AVM Is located in the brain. Mine was on the cerebellum and was told by doctors that’s not a place where they expected seizures to happen, so I was not given any seizure meds post-craniotomy. Hope this helps you!
they put you on anti seizures immediately as a precaution because it’s always a risk after a craniotomy. I as confused about it when they put me on it but they said it’s just to make sure everything stays in the borders of safety and nothing goes wrong after they did all that work fixing the brain. it would be irresponsible to not use them when it’s such a preventable risk.
I started having seizures one year after my surgery.
It was a result of scar tissue forming, it can take
Up to one year to show. Everyone is different,
Some never have problems, others do, it is
A wait and see. Usually after surgery they
Normally do get you anti-seizure meds just
In case. Then after one year you are taken off,
he may or maynot have a seizure.
thankyou for your response i think its just fear of the unknown
Thankyou to everyone who replied to my query, you hear so many different things and it gets so confusing until Luke’s diagnosis i had never heard of an avm before, my husband and i are still trying to get our heads round everything our emotions are all over the place. We try to stay calm and positive around Luke i think he is handling it better than us but a few times i have broke down at work thankfully they are very understanding and give me time to get myself together, We will get through this as a family and get Luke better
Hi Sam
Jake wasn’t given anti seizure drugs after his craniotomy. He was given them after the initial haemorrhage as he kept becoming unresponsive and they thought these were possible mini seizures - it turned out however that his avm wa sbleeding again and pressure was increasing on his brain. But following the craniotomy they just kept him very closely monitored (obs every 15 mins) and woke him the following day - no meds were needed. I do think it varies though x