Had my 1st seizure last night, 10 months post op, can anyone share their similar experiences?

Hi Everyone,

I have a crainotomy in October of 2009 to remove my AVM and have been recovering well ever since. Even though I have been left with a small scotoma in my right peripheral field my recovery ahs been going very well. Not back at work or ablr to drive but physically and mentally I feel I have been recovering very well.

While playing squash last night I felt very light headed and started seeing stars so I got off of the court and sat down and the next thing I know I was being carted off on a stretcher.

At the hospital I was told that my blood work was great and after a CT Scan confirmed that there was no new blockage or activity in my brain they sent me home and told me that it was fairly normal for this to happen but if it happens again I will have to go on anti seizure meds.

I was wondering if anyone has any experiences or suggestions that may be able to help me try to deal with this issue moving forward.

Thanks so much.

All the best,

Ryan

Ryan,…

It was almost one year to the day that I had my first Grand Mal seizure. I am now on an anti-seizure “keppra” substitute @ 500mg twice daily. (please see my profile/blogs for additional details) It was a direct related reaction to my AVM rupture/brainbleed in July/August 2008.
In reading some of the other posts and blogs here on this site, I would assume that this is a somewhat common occurance. (ie) AVM’s = seizures to one degree or another.
Talk with your neurosurgeon/physician, and find out all the “Do’s and Don’ts” that relate to you and your condition.
I would also suggest that you read up on the different types of seizures, and gain a better understanding of what is going on, in your brain.

Here is a link for you,

http://www.epilepsyfoundation.org/

I hope this helps a lil’ bit.

Ryan,…Take care.

William

Sounds pretty familiar! I had my craniotomy on July 28, 2005 and a grand mal seizure roughly 5 months later on December 25, 2005. I was placed on 3,000mg of Keppra immediately following the seizure and my neurologist has kept me on it ever since. I am now at a slightly reduced level and am taking 1,000mg twice a day. The reason my my neuro put me on such a high dose and has kept me on for so long is due to the fact that I was having seizure activity in the months prior to my craniotomy and was already on Dilantin. They kept me on Dilantin for a couple of months after the craniotomy and started weening me off of the meds. I was without medication or any signes on seizures for a couple more months, but then was hit with the grand mal. Seizures following brain surgery or a bleed, or really any type of brain injury is not at all uncommon. If this was you first and only, then I would not worry too much as seemed to be triggered by strenuous activity. That being said, you may want to consider taking it a bit easier when it comes to sports and other types of physical activitiy, otherwise you could end up needing medication to help keep things under control.

Good luck to you!

Hi Ryan,

My name is Bonnie and I had my AVM removed in 2000. It was in my left occipital lobe. I did not start having seizures until 2008. It was quite a shock and I am still working on the right med dose. I am also on Keppra 1500mg twice a day. It def has to do with blood pressure, alcohol use, dehydration and being exhausted. These things are all triggers. I agree with William, that you should read up on all the different types of seizures. And maybe scale back until you know whats really going on with your body.

Hope that helps, and I hope things get better.

Take care,
Bonnie

My 1 year old daughter had a crainotomy almost four months ago. She just started having seizures too. She has been on meds since her surgery, but have been increased since the seizures started up. We were told that they are happening now because her brain is in a different stage of healing. As it “lays down new tracks” or regrows and heals, it will missfire from time to time and cause a seizure. As long as they are few and far between it ok. Hopefully the meds will help settle things for you and you can continue to heal nicely.

Take Care,
Aimee

hi Im from Ireland and currently waiting to have open surgery so worried about this crainotomy after surgery what is pain like? is it bad or not so much? many thanks joy

Joy, After your craniotomy, you will be on a pain med, therefore you will not feel that much pain...It does take time to heal, but once I was home, I just took Tylenol, which helped me with the pain, so I have to say that the pain was not that bad.

Stay Strong & Positive and always know we are here to support you!

thanks for ur reply I jist have alot of questions and best to ask people who have already been there. when your wake up from the op r u in a bit of a gaze for a day or to with the drugs they give you? also is ur head were it was opened sensitive afterwards like I mean months after or does ud head heal up n go back to normal? sorry for all the questions.

For me, Joy, I didn't feel any pain while in the hospital because of the med they had me on. I remember them saying they had taken my stiches out and I didn't feel a thing. Where they did the surgery was painful for a while, but as I said I could just take Tylenol and it wasn't bad at all.

Once my hair grew back in..you couldn't see my scare at all...

Every case is different, but the best thing to do is to stay positive that soon it will be over and you will be on the journey to recover.

Please don't hesitate to ask any questions from the members. If you would like to post your own Discussion perhaps more members can let you know their journey to recover.

I have an AVM located in my right occipital lobe. I am on 500 mg of Keppra. I recently went into emergency since I was having flashing in my left peripheral vision. This is what happened when I had m recent hemorrhage. They gave me Lorazepam and I believe this helped my eye seizure. I am currently waiting on having surgery.