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AVM Survivors Network

Seizure post 7 months Craniotomy

#1

Mu husband has an avm rupture 28 aug 2018 in his right temporal lobe and was operated successfully. Doctors advised he is abso alright as all his post surgery angio confirmed the same. And 8 months post craniotomy he had his first ever seizure yesterday. It all happened at home in front of me and m freaking out.
CT and blood reports are normal. The docs think its cos of the scar tissue from his surgery
He is now put on anti seizure medicine which as per doc os for long term. He joined back his job that he lover and includes driving alot. Since he cant drive again for 12 months minimum, he is very demotivated with the situation.
Is this a part of his life now…seizures can come any day? Any time?
Is there anyone who had just one seizure post craniotomy like my hubby? What is your experience. I am looking out for experiences from ppl with similar situation. I do know everyone is different but it makes me feel better when I hear similar experiences.

Thanks alot to each one of you🙏🏻

#2

GY,

First, welcome to the group. I have never met a group of people on the internet where there is concern and support like here.

I have spent many hours hanging out here late at night, when it’s been quiet and I could read and do so uninterrupted. Not only reading but also mourning all that I’ve lost because of this AVM. I would encourage both of you to do that. The power of knowing you aren’t alone is huge.

While my experience iisn’t the same as yours, let me share a couple of things that I’ve learned…
-I’ve been battling this beast for 41 years now. There have been some very long “truces” during it, but it’s always been there to remind me that it isn’t gone. It’s okay to mourn what you’ve lost and I think that allowing/encouraging your husband to feel sad about what he has lost is a very important gift you can give him.

-I’m currently almost 15 months since my last AVM procedure where they put a ton of super glue and about 30 coils in my head. There was a time, approximately 6 to 9 months out, where I made some pretty decent steps towards resolving these issues. And there have been many that haven’t improved at all.

  • If I can’t see it, then it’s your problem, not mine. Invisible (relatively speaking) disabilities are hard because people can’t see them. A friend of mine’s daughter lost both legs above the knee. You can tell.

  • Learning that unfortunately, many in the world view that you are what you do for work. That makes it very hard if your sense of self worth is tied up in a job you can’t do. My counselor and I have spent a large amount of time working on what that means and how to break free from it. It has taken a long time to get to that point and I am not by any means there consistently.

If it is available, I would strongly recommend that the two of you look into where you might be able to go (either just your husband or both) and talk through and grieve what you’ve lost and map out a plan for how to deal with the disappointments. I can honestly say that if I diidn’t have “my Randy,” at some point in the last 15 months, I would have ended up hospitalized or worse. Yeah, it’s that important and that’s why I’m talking about it - it needs to shed the social stigma that currently plagues it.

  • My laryngologist has told me that there are certain procedures he will not do until someone is at least 12 months post procedure. Why? Because inflammation can take more time to heal than expected. I’m at 15 months, if any major changes happen it’s going to be a miracle or me retraining my brain to compensate.

I have no experience with your exact medical situation, besides I wouldn’t want to attempt to practice medicine without a license. But I, unfortunately, have fairly extensive experience dealing with the curveballs that an AVM throws at us.

My favorite line from the movie, “Finding Nemo” is “Just keep swimming, just keep swimming.”

May the water that we all swim through be a beautiful ocean with a white sandy beach and not muddy flood waters racing down the mountain.

TJ

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#3

@Gee.yasha

I see you also found Mike in a separate thread. I’ve not had a craniotomy or seizures but reading around here in much the same way as TJ does, my reading of it is:

  • Craniotomy is a major assault on the brain and it is undoubtedly a side effect of surgery that you can have a seizure risk. I’m sure it’s a risk with other forms of treatment, too, but it seems pretty common with a craniotomy.
  • Getting onto anti-seizure medication seems to be effective, so it may well sort your husband out.

The anti-seizure meds do take a lot of getting used to, so it will take time for him to feel anything like human. And as you say, driving for a year is banned. Hopefully the meds will get him in a place where he can drive again.

Hope this helps,

Richard

#4

I am sure there are many here who will assist with your questions but nonetheless I am praying for you and your husband and hope everything works out fine… God bless!

#5

Hi there!
Actually had an experience very similar to your husband’s. Right temporal lobe AVM rupture about two years ago, treated by craniotomy. I had a seizure as well roughly six months after, under slightly different circumstances. My doctors had me on anti-seizure medications after the craniotomy and I was weaning myself off of them. It sounds like your husband was never prescribed anti-seizure medications?

Anyway, the seizure was likely brought on because of dehydration. I’ve been told before that if you are at risk for seizures, it’s important to be mindful that you are drinking enough water, getting enough sleep, and not enduring extreme stress for prolonged periods. If these factors are properly managed and the medication is taken, the risk of having a seizure is minimal.

If your husband is taking levetiracetam (Keppra), he might feel sleepy for the first few months until his body becomes accustomed to it.

One final thing I would recommend is checking his driver’s license status. After I had my seizure, I had assumed (because I had been told by several people) that I wouldn’t be able to drive for a year. But when I actually pulled the record for my license, I found that the paramedics who had taken me to the hospital after my seizure must not have reported it, because my license was clean. So I would definitely recommend he check before he gets too down in the dumps about the situation.

#6

GY,
I am sorry your husband is having such a rough time. My son had a large AVM with several bleeds that was finally obliterated 20 years after diagnosis (his was a very complicated case). He had his first ever seizure 2 years after treatment—his doctors were always amazed he had never had seizures. He has been well controlled on Keppra and the only other seizure he ever had was when he weaned off his med against medical advice—he learned that lesson! He is now 5 years post seizure and 39 years old and is doing well. We did have to get insurance approval for brand name Keppra because he had some bad emotional side effects that were much worse with the generic. Prayers that your husband will do as well on medication and no more seizures! Blessings to you both, Dianne

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#7

Nope, l never had a seizure. I had the craniotomy. Not gamma knife. Not any problems afterwards.

#8

I had almost the exact same thing happen to me. I had one seizure about 6 months after my craniotomy and it was about one week after coming off of the dilantin. Same thing as my doctor said the healing process takes about 2 years. I went on Keppra right after that seizure and after 4 years or so was able to completely get off of the Keppra. I’ts been almost 2 years since coming off of the Keppra and no seizures at all.

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