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AVM Survivors Network

14-month post craniotomy, first seizure

#1

Hey everyone. Some of you already know the details of my story-- two bleeds, a week apart, followed by a successful craniotomy 14 months ago. I have relayed the details of my lingering deficits-- word finding, attention span, sometimes explosive temper (they are, after-all, teenaged boys) and the strategies I have explored to cope with them.
Recently I was at a grocery store, in line to cash out, when suddenly my head turned (without me wanting it to ) and my right arm and leg started flexing. Well, the next thing I knew I woke up in an ambulance heading to the hospital. I had a tonic-clonic seizure (used to be called Grand Mal) , my first, and so far only.

However, the neurologist who saw me informed me that she was sending a report to the Ministry of Transport ( driver’s licence gone :angry:) and that I would need to be on meds for the rest of my life. (Keppro).

Anyway, went back and saw the neurosurgeon who did my craniotomy, and he did a ct scan, and said that it was not out of the ordinary, that I had two red flags for having a seizure (AVM and brain surgery/scar tissue) but that hopefully I would only have the one seizure, and that I could ease back a bit on the Keppro (reduce the dosage gradually).

I am writing to ask if it is common to have seizures start a year or more after the surgery, if other group members have experienced this, or heard similar stories.

Thanks

#2

I had one 10 months after my craniotomy but I blame myself a bit. I decided to enjoy my daughters graduation and have a few beers outside in the heat. had a seizure.
I should have known better as I was on keppra as a pre caution… found out the hard way to avoid alcohol and stay hydrated!

#3

Thanks Mike,
Yes, I too find it hard to resist the occasional beer or glass of wine. So far haven’t had another seizure, but it has only been a month.
Cheers, Eb

#4

I’m only 12 days out from my craniotomy but I’ve never had a seizure or brain bleed in my life. I don’t drink and try not to overdo in the heat so maybe I’ll dodge this? I sure hope so, not being to drive while I heal is making me stir crazy already…I can’t imagine never being able to drive again. I am my and my mom’s only means of transport. Small village and no bus to our favorite grocery store.
Guess I was lucky as my DAVM was flat and just lying on the surface of the brain, they didn’t have to go digging in after it.

#5

Darn! Good to know nothing out of the ordinary on the scan. Here’s hoping you just do the one seizure.

Thinking of you all,

Richard

#6

I had my first tonic clonic roughly 15 months post craniotomy. Drivers licence gone. Mine was that I was working on call, not enough nutrition and dehydrated as well. Driving back home on the motorway and had it then! Very grateful to God that it I got away a minor accident.

Neurologist did the relevant tests and has not diagnose epilepsy. Just confirmed that it is quite common. (Aside from the car my story seems similar to yours)

Been more than a year now and I have not had such an episode. Just waiting for the driving licence to be re-issued.

I wish you the very best!

#7

Thank you, Waquaas.

Yes, your story is very similar to mine.

I presume, from the term “Motorway”, that you live in the UK? I do not know the traffic laws there, as I am in Canada, but I am hoping to get my licence restored after three months…….perhaps a tad optimistic.

Cheers, Barry

#8

Sorry to hear about what happened to you ebAVM and I can only pray that you recover well and never have to endure anything like that again… God bless!

1 Like
#9

Yes I am living in England. The law is that after one unprovoked seizure, ones licence is revoked for 6 month. Thereafter, it is reviewed and the medical records are accessed by the doctors of the driving agency who have the final say irrespective if the specialist looking after you feels that you are well enough and can safely drive.

I am currently awaiting their final decision.

I hope in Canada the driving agency are not a pain to be dealing with like here. There’s no communication as to why they come to a certain decision. But anyways I could write at length in terms of their inadequacies but I shall await and hopefully be back on the road soon.

Please be mindful you may have to inform your insurance company as well.

Anyhow I wish you all the very best.

Waqaas

#10

You lose you license for twelve months in New zealand. I lost it twice in a four year period.

#11

Mike
Was that your only one and never had after that?

#12

I have had a couple of very small ones after that nothing that made my body twitch they called it partial simple seizure

#13

Thats a relief.
Are you on anti seizure meds?

#14

yes,Keppra… I’ve been tempted to try to wean myself off of it but the fact that I get occasional partial simple seizures when I get overheated or dehydrated my neurologist doesn’t recommend it; she says since I tolerate the Keppra well she will probably keep me on at the rest of my life as a preventative measure.