It is incredible to read all these amazing stories from all of you!
When I was 30, I had an incredible life - great job, just qualified as a volunteer firefighter and a fantastic group of friends. Then I started having little blackouts when I didn’t remember how I got to one end of the house to the other. So I went to my doctor who referred me to a neurologist who ordered an MRI. That showed a 6.5cm AVM in my right temporal lobe. I had to stop driving, stop firefighting, stop living.
The neurologist told me the AVM was too big to operate on and recommended stereotactic radiosurgery. They gave me two doses over four years to shrink the AVM. The second time I had the frame put on by a student and she put in on in the wrong place so they had to take it off and do it again. I ended up with two very black eyes which will totally swollen shut - awesome!!!
I remember so very clearly the day that the whooshing (bruit) stopped. I was at home one weekend and all of a sudden my head was silent. It was eerie. It was quiet. I was finally at peace.
Not long after the second lot of radiation, I got a very bad headache and knew immediately something was wrong so I took myself to hospital. After a scan, they told me I had two aneurysms in the same location as the AVM. These were coiled.
Once the AVM got to a size that was appropriate, it was embolised.
My AVM has now completely gone.
Side effects from my treatment - yes, I have memory problems like a number of you. I also have post traumatic brain injury epilepsy from the radiation treatment but this is very mild and dealt with very effectively with medication. I drive and live and full and normal life.
My AVM was never going to beat me and I think having that attitude definitely helped me get through the seven years it took to deal with it.
I am now 44 and look back at that time as very challenging but also know that I wouldn’t be the person I am now without having gone through what I did.
Look forward to reading more stories on this site.
Jane! What a story of despair and triumph. Thank you for sharing it with us. Hearing stories like yours is exactly what some of us here need: we need to know that life can go back to normal, even if it is a new normal. And hearing you talk about attitude and challenge and enrichment does everyone good.
We’re glad that you found us, Jane. Please stay around and be a support for other survivors. Your presence is a gift to all of us.
Thanks for your email. I have been looking for many years for a website
just like this and am sooooooo pleased to have found you!!! I very much
want to help others that are starting on this journey because when I found
out about my AVM, there was nothing I could find so please, yes, I very
much want to stay in touch.
Hey Jane, always good to read all these stories on here and the positive attitudes, can be a bit of a strain to stay on top at times!
Am also a Kiwi, can I ask what area you are in? Interested in your neuro team location and how you have found them and their interaction.
I am mainly treated in Wellington although I am about 2 1/2 hours from there which makes for fun travel at times
Just finished having an embolization and, just to mix it up, they found another AVF that will need to be looked at next year, yay.
Anyway, have a great Christmas and enjoy plenty of summer bbq’s
I’m in Wellington too Jim☺
Would prefer to give you my answers to your questions off an open
forum…are you comfortable sending me your email address or mobile
number? Would love to talk to you.
I too have been through what the other has described. Am now on lamotrigene and not a great fan of it. I’m in Hawked Bay. I’ll write in more detail when I’m on my tablet next… not easy on a phone keypad lol. I have felt so alone until I found this forum as I don’t know or have spoken to anyone else who has or have had an avm.
just to add further info to my previous post, I had stereotactic radio surgery in Dunedin two years ago. Last MRI shows my 2cm avm has almost sompletely cleared, but some scar tissue remains. If had one seizure since the surgery and am on lamotrigene and clonezapam. I have auras still and because of these suffer bad anxiety that I may have a seizure in public. I’m slowly trying to work through this but its not easy . I’m self employed and it has interfered with my work occasionally with me having to leave the job a couple of times through a panic attack. I have area side effects with the meds and I believe anxiety is one. Part of the panic issue is I know if I have a seizure I will lose my business through not being able to drive. … ( and i ride a motorcycle too silly me…). I saw a neurologist last week for the first time which was good. Until now the docs just been guessing what I should be on and the dosage… I’m glad I found this site and it would be nice to communicate with others especially about issues with their meds and side effects, one of mine is I sometimes have a memory like a goldfish! Those reading this who are still waiting for surgery I wish you all good luck and hope you have as much success as I have had in reducing/eliminating the avm. And wish everyone a merry Christmas. Grant.
Thanks, I procrastanated for a while then decided I had to do something. The team in Dunedin were confident it could be sorted with radio surgery so I decided to go for it. I was totally against the idea of normal surgery due to the risks. I was worried about having a bleed if I left it and a stroke… Or worse. Glad I had it done. Scariest part is the angiograms. I have to have another later this year and I think they will have to cuff me and take me in kicking and screaming!
I, ALSO, procrastinated to get my large AVM fixed pretty well w/ brain surgery. (7 surgeries, altogether.) It took me 10 YEARS to decided! Year by year, I was getting gran- mal seizures more and more frequent.
10 ten years is a long time to procrastinate.! I’m glad you had it fixed 7 surgeries wow it must have been a really hard time for you! I hope you are now seizure free.
I have been sent a request from the hospital for an eeg. I had a quick Google and apparently they can cause seizures in people with epilepsy due to the strobe lights they use.
I am extremely light sensitive so in not sure if I’m keen on having it.
I can’t afford to have one and lose my licence as my work depends on it… Its been 3 years since my last seizure and my avm is almost gone so I’m not sure why they have requested it…? I do have the odd aura which is becoming less frequent and partially bought on by stress so I’m not sure what good an eeg would do??? Any one have any views on this?
I am not cured w/my AVM, but almost. Before my brain surgeries, in my
20’s, I used to get @2 gran mal seizures a MONTH. After the brain
surgeries in the last 26 years, I only had one mild seizure!
I am sure you have talked to a couple neurologists, right, about a risk of
seizures during an EEG? I never heard that before. Maybe the doctors want
to double check your AVM with another EEG??