Seizure after AVM resection

Symptoms & Treatment
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Hello All,

Well, time for an update. Luke had a good summer and recovery from his craniotomy went very well. We had some issues with his incision that a wound care referral was able to get us through fairly smoothly. Turns out his absorbable sutures were not absorbing as quickly as the tissue was healing and a few of them spit out of the incision which created small holes. We just had to be careful and keep them clean each time so he wouldn’t get an infection. Sounds easy enough but he is an 11 year old boy so it was a bit challenging. But by the middle of summer he was able to swim and get back to doing the things he enjoys again. We are so thankful for that.

Luke had his follow up MRI on August 25th which unfortunately showed an area of concern for residual right posterior cerebral shunting lesion. This is the area that showed some flow on the post-op angiogram that we were informed about. The hope was that this would close off and not need any further treatment but turns like that is not the case. He will be going back for another angiogram on 9/29 to further evaluate and plan for treatment. Based on the MRI they think this will be a good candidate for stereotactic radiosurgery. The reason we could not do radiosurgery before was the possibility of swelling after radiation was too risky due to his AVM being intertwined with normal brain tissue. Now they feel like it will be safer because he has space that will allow for the swelling. But, we will know more after the angiogram.

Luke had his first seizure during class last week which gave us all quite a scare and landed us in the local Children’s ER. Thankfully, his scans came back clear and there was no acute hemorrhage. I know that AVMs can cause seizures, but because we had been fortunate enough to find his incidentally he had not experienced anything like this before. He is now on Keppra and hopefully that will keep them at bay. Anyone here experienced your first seizure after AVM resection? We will be seeing his neurologist to discuss this at his follow up appointment on 10/14. I guess I just want to know what questions I need to ask and if anyone else has been in a similar situation.

Thank you in advance,

Brandi

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@Brandi3

I think there’s a bunch of people who’ve gone through much the same. Sometimes it seems to be attributed to scarring post op as much as to the AVM itself.

Keppra counts as a nasty drug: some people get on with it and some people find it very hard and not good at all. I seem to remember @dageris recounting finding different medication for his son. If Luke finds it very difficult, know that there are alternate medications out there to ask about.

Very best wishes,

Richard

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Thanks for the update. I am sorry to hear that the flow didn’t close off and Luke has had a seizure. That is so scary. Hope you get some answers after the angiogram on 9/29 and neurologist visit on 10/14. I’m always thinking of the little guy since he had his craniotomy around the same time as my son. :purple_heart:

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I had an AVM and did not have a seizure but my husband had a tumor removed last year and he’s had 2. He is in 500 keppra twice a day and it seems to keep them at bay. Sometimes seizures come on from stress, heat or just your brain requesting a reset. Hopefully it’s just a temporary set back and he’ll keep moving forward Prayers for you and your son

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Just to let you know Linda that my son was on Keppra 500 twice a day also but is now on Keppra 500 2 pills ER (extended release) at night. That has helped him to just take it one time at night (1000 mg). And has helped him with feeling sleepy. Just sharing info

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Sorry to hear about your son, but please keep us posted on his progress… God bless!

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