Experiences from embolisation

Hi, I will have my first embolisation in end of October and I’m having a lot of questions…I’d be glad to hear about your experiences and side effects. My AVM is in the left occipital lobe and drainage in the deep structures, It’s about 3 cm large. I’m concerned about the effects it might have on my vision and possible seizures afterwards. Also, what is an embolisation like? Like an angiogram only that it take longer? I’m affraid I can’t stay still… How do you feel afterwards? And if you have gotten seizures, did they come immediately?

Hi Julia,

I have had two embo procedures at USC followed by radiation. The location of yours is the same as mine. Mine was 4CM x 3CM on the left occipital lobe also . I have a follow-up cranial angiogram on September 12th to see current status.

The first procedure is a little scary. Only two days in intensive care. Felt very week but recovered nicely. I was lucky to have a great team at USC. I have had no seizures since the initial episode and none after ebolization. On 2000mg Kepra a day to keep the seizures away. I wish you the best of luck.

Derrick

I only ended up having 1 embiolisation as my first one my radiologist got so much of my avm that by the second time there wasn’t much to get and it all was embelosised by second even though it was support to be three or more and then I had a bleed but we fink it was because of how much pressure all in one go, then removed my avm…I’m telling you this so you or your family make sure you don’t let the radiologist talk you into something on the spot make sure everything is done like how it always sed it was going to be done in the first place…but after my first embiolisation I felt fine was asleep for the first day but after that up talking …my eyes were fine felt abit of relief knowing some had been done …hope all goes well :slight_smile: x

Hi Derrick, Thank you for taking your time to answer. So they think they got it fixed with the teo embolisations? Or do you have craniatomy waiting? Are you allowed to drive a car? Afetr my seizure i got 1 year driving prohibition and in case I get a new seizure the prohibition will be 1 year after that. Since I live in a remot area this is very challenging for me. Also, do you know if you will tou stay on meds for a long time still? I’m on 600mg Trileptal and after taking them for 2 months I finally start feeling like myself again.

Julia

Hi VKaye, Thanks for sharing your experience. Yes this is what is puzzling me, some doctors talk about that iy MIGHT require more than one embolisation and the one doing the angiogram said thadt maybe 3,4 or even 5. I also don’t know if they will do a craniatomy… Well, I assume it is not so easy to know for them, they probably have to take it step by step. They did say that they want to avoid raising the preassure in the brain too much and therefore they will glue only smaller parts at a time.

Julia

Hi Toni, Thank you for your answer. I understood from my doctors that the embolisation will be done with me awake, probably some anti anxiety meds but still awake, and that will take abt 2h… My angiography took 30min and went fine, I got 10mg Diapam (Valium) then but anyway, then they went only to the artery in the neck… I don’t like the idea of them “poking me” in my brain with a “stick” while I’m awake … So basically you were on meds less than a year from your stroke then?
Julia

Yh I believe now that its best to do a little bit as a time to prevent the pressure my first one such a huge amount was done/glued 80% that I fink that is what caused my bleed because of the pressure and after the first time the headaches were terrible I couldn’t even move…if I did the pain would rise due to the amount done well I think …but my solister is looking into it x

Hi Julia,
I had a Dural Fistula embolised in April 2012 under general anaesthetic.
The procedure took over 4.5 hours and when I came around I had a horrible headache however that was sorted with meds. I then spent 24 hours in a High Dependency Unit and the hardest part was lying flat in bed for 12 hours. I was put on DF118 (Opiate Painkiller) for 2 days and low dose Amphetamine for 6 months. I had no driving restrictions or seizures and vision was not affected.
I had a follow up angiogram 6 months after my embolization and I have to have an MRI every year.
Don't worry everything will fine,
Best Wishes,
Macker

Hi Macker, Thank you for sharing your story. Why Amphetamie? Sounds scary, Isn’t that a quite addictive drug?
I am actualky not worried yet, I think that will hit the day before or so, but I have some kind of need to gather as much information as possible, even if I for sure will not know how things are untilthe day is there. Well… I hope for the best, and trust the doctors.
Julia

Hi Julia,
I was put on Amphetamine for headaches. I was put on 10mg's for 2 months, then 20mg's, then reduced to 10 and 5 mg's over a six month period. The drug is also used to treat depression but at a much higher dosage. When I came off this medication I did not have any withdrawal symptoms or any feelings of dependency.
The drug worked, the headaches are gone!
Enjoy the weekend,
Best Wishes
Macker

I had it done aug of 211 but it did not cure avm had bleed and stroke march 2012

Hi Julia,

Had my follow-up Cranial Angiogram on Tuesday at Loma Linda here in Southern California. I did lose my license for about a a year and half, Just got it back 6 months ago. My wife did all the driving during this time. The process to renew my license was intense. I am meeting with my neoursurgen next week to go over the results of this weeks angiogram. I wish you the best of luck. My wife has been my rock during these last two years. If you need someone to talk to, she would be willing to share her experiences during this trying time.

Regards,

Derrick Wagner