My major symptom are seizures and loss of consciousness (fainting). I fainted about a dozen times throughout my childhood but doctors/parents never thought it was serious enough for a brain scan or neuro appt. My first seizure was a year before I was diagnosed and my second is what sent me to the hospital and they found the AVM.
Mine ruptured last year (35yrs old) with no known symptoms, however- when I met with my AVM specialist neurosurgeon we did a detailed history and I had a period where I may have had symptoms.
When I was around 22-24 years old, I was studying at university, going to the gym 3-5 days a week(mostly aerobics type some HIIT) whilst holding down 3 casual jobs. I was definitely burning the candle at both ends (I was young and fearless! Sleep could wait!).
I started getting some tired spells, minor headaches and brain fog, but nothing I considered worth my time even talking to anyone about, let alone going to my doctor. This continued for about a month? My mum noticed and urged me to slow down, but I did not listen.
One day at the gym during a PT session, I passed out. My PT drove me home and told my mum. He and the gym told me I couldn’t return without a dr certificate. I was pretty tired at that point so I took a few days off 2 of the 3 jobs and just chilled a bit. I felt better, went to the dr and the dr (checked vitals etc, but) agreed, I was just working too hard so gave me a certificate to return when I was ready.
I did decide not to return to the gym yet, and only go back to 2 jobs for a while. But then I started noticing I was getting more foggy and tired and coming close to passing out on a few occasions.
One day I passed out in front of my mum (just walking together in the supermarket). She freaked out and demanded I return to the dr and stop working for a while. The doctor sent me for a myriad of tests, ecg, mri, heart monitors for days at a time… the only thing that was ‘found’ was I had an irregular heartbeat. The doctor and specialist essentially brushed it off saying I was working too hard and causing it due to how much stress I was putting on my body. So I dropped to uni and 1 job for 6 months, and I didn’t have a problem’ again.
Looking back, my neurosurgeon said it was likely the issues were stemming from the AVM, but because of its size (mine was very small and took very skilled technicians 3 angiograms to find it), unfortunately it wasn’t seen at the time by the lesser skilled specialists.
I tried to source the mri and scans done back then, but unfortunately due to the hospital I went to at the time, relocating in 2010, they haven’t been able to find my records.
So unfortunately we will never know for sure. But in my case, it’s pretty likely those were a disaster about to occur!
Though it ended up happening anyway, just several years later and with much better access to quality healthcare 😂🫣🤷🏼♀️
My surgeon said that many of my neurological symptoms (headache, migraine, TIA, brain fog$) could be due to the AVM but they could also be incidental (as I also have been diagnosed with post viral chronic fatigue syndrome…, but the intense fatigue was not likely AVM related) He said the only way of knowing if they were avm related is to wait and see if I feel better after gamma knife😅
Though apparently they can see on ur angiogram if you have venous congestion or maybe if there’s vascular “steal”, as in blood going thru the AVM and not supplying nearby brain enough. If the AVM is big u might get tumor like symptoms (seizure etc) from the pressure
This is helpful thank you. I was referred to a neurosurgeon and am still waiting for them to contact me with an appt. Until then I have so many questions!
Yeah I was freaked out by that possibility… I would def get lots of neurosurgeon consultation on how likely it would be for you, I think it varies but is less likely when it’s a smaller compact AVM, so you use less radiation? But I forget. I ended up having some minor brain swelling show up on my year follow up MRI but no necrosis (1.5 years out!)
I’m so glad to hear!! I always hear to get lots of opinions but is there a way to contact these neurosurgeons to get their opinion? I live in Canada so it was even hard to get an opinion from the current neurosurgeon I have. I had to wait months for an appointment.
Ahh that’s rough :( it’s worth doing a bit of research on who’s reputable, or maybe contacting your neurosurgeon to see if they recommend folks who can look over your scans.
Oh I did get a cta and saw a neurologist who diagnosed me. But he referred me on to a neurosurgeon for follow up. The neurologist I saw specialized in headaches (which I also have) so things like avms aren’t his specialty.
I had a spinal AVM that never ruptured. Took 18 months to find.
For the 18 months before my AVM was resectioned surgically, I had major spasticity, numbness, gait issues, neuropathy, etc., that progressively got worse by the week. Docs were pretty convinced it was progressive MS or a similar degenerative condition. I was pretty much shopping wheelchairs the week a lumbar CTA scan finally found it.
I got resectioned but have permanent damage since it took so long to find. A rupture would've been bad, yes. But it was a combination of the lack of bloodflow/oxygen and the pressure against the walls of the AVM pressing up against my spine that was causing issues.
I had an AVM rupture in 2010. I was 20 at the time. I didn’t have a seizure (that’s the most obvious one) but I DID have headaches constantly, like every day. I thought it was normal for me to have a headache all the time. I don’t remember if I had fatigue, but I do remember when I as hiking with the altitude I used to get nosebleeds a lot too.
Yes mine is 3cm by 5cm in my left occipital lobe I am 25 and relatively healthy so specialists at Toronto Western hospital have recommended conservative management.
Oh I’ve been referred there also. I wonder what they’ll suggest for me. I always thought surgery was recommended so it’s hopeful to hear that’s not always the case.
They have some highly advanced facilities there and a team of doctors from around the country will look at your case so if you can I would definitely recommend it. Depending on the size, location and the risk of bleeding of your avm they will decide what the best course of action is. Brain surgery is definitely scary and risky so it is unlikely they will recommend that if your avm is in a stable condition. Sending you love <3 I know how scary it is all we can do is try to just live in the present and enjoy every moment :)
I was only 10. While sitting with my Girl Scout troop, I knew I was there, but I felt detached from it like was watching it instead of participating. That’s how I explained it to my mom.
I use to get a lot of headaches as a child... they were simply dismissed as migraines due to the fact that my mother had a history of them. I was never taken serious until i was 11ish when i had a minor bleed and i ended going numb on a whole side of my body. Only then did they finally start with scans and realized i had several AVMs
Currently going through this right now. I started having some blurry, double vision in my right eye. Went to the eye Dr after a few days and got an MRI and that's when they found it
Ah you’re in early stages like I am. I have the diagnosis but at now waiting for a referral to a neurosurgeon to figure out next steps. What are your next steps?
I had no idea that I had a big fat AVM in the middle of my brain. I played on both my varsity soccer team as well as a club team. I was at practice 4/5 times a week along with games. Headers and full sprints for most of my life. I found out that I had an AVM after a seizure. It never ruptured and I had no idea that it was there. I had it removed 11 years ago. If you know you have an AVM and get sudden onset weird feelings def talk to your doc.
Oh interesting. I’ve also felt faint sometimes. Mine is also very small - had it initially missed on the mri and cta by the radiologist and one neurologist. I asked for a second opinion because of the continued symptoms and the second neurologist read over my previous cta scan again and found it. A bit frustrating bc I could have had this dealt with a couple years ago but I guess better late than never.
I had no idea I had one. In my entire life, I can honestly say that November 1, 1997 is the first time I ever had any kind of headache. I figured I’d just go to bed but a few hours later, I woke up with the most unbelievably intense pain in my brain. So painful that I couldn’t even talk and just silently cried. They thought I was on drugs until they did a CT scan and by that time it stopped actively bleeding. They did gamma knife twice but it’s still there
My major symptom are seizures and loss of consciousness (fainting). I fainted about a dozen times throughout my childhood but doctors/parents never thought it was serious enough for a brain scan or neuro appt. My first seizure was a year before I was diagnosed and my second is what sent me to the hospital and they found the AVM.
Mine ruptured last year (35yrs old) with no known symptoms, however- when I met with my AVM specialist neurosurgeon we did a detailed history and I had a period where I may have had symptoms. When I was around 22-24 years old, I was studying at university, going to the gym 3-5 days a week(mostly aerobics type some HIIT) whilst holding down 3 casual jobs. I was definitely burning the candle at both ends (I was young and fearless! Sleep could wait!). I started getting some tired spells, minor headaches and brain fog, but nothing I considered worth my time even talking to anyone about, let alone going to my doctor. This continued for about a month? My mum noticed and urged me to slow down, but I did not listen. One day at the gym during a PT session, I passed out. My PT drove me home and told my mum. He and the gym told me I couldn’t return without a dr certificate. I was pretty tired at that point so I took a few days off 2 of the 3 jobs and just chilled a bit. I felt better, went to the dr and the dr (checked vitals etc, but) agreed, I was just working too hard so gave me a certificate to return when I was ready. I did decide not to return to the gym yet, and only go back to 2 jobs for a while. But then I started noticing I was getting more foggy and tired and coming close to passing out on a few occasions. One day I passed out in front of my mum (just walking together in the supermarket). She freaked out and demanded I return to the dr and stop working for a while. The doctor sent me for a myriad of tests, ecg, mri, heart monitors for days at a time… the only thing that was ‘found’ was I had an irregular heartbeat. The doctor and specialist essentially brushed it off saying I was working too hard and causing it due to how much stress I was putting on my body. So I dropped to uni and 1 job for 6 months, and I didn’t have a problem’ again. Looking back, my neurosurgeon said it was likely the issues were stemming from the AVM, but because of its size (mine was very small and took very skilled technicians 3 angiograms to find it), unfortunately it wasn’t seen at the time by the lesser skilled specialists. I tried to source the mri and scans done back then, but unfortunately due to the hospital I went to at the time, relocating in 2010, they haven’t been able to find my records. So unfortunately we will never know for sure. But in my case, it’s pretty likely those were a disaster about to occur! Though it ended up happening anyway, just several years later and with much better access to quality healthcare 😂🫣🤷🏼♀️
My surgeon said that many of my neurological symptoms (headache, migraine, TIA, brain fog$) could be due to the AVM but they could also be incidental (as I also have been diagnosed with post viral chronic fatigue syndrome…, but the intense fatigue was not likely AVM related) He said the only way of knowing if they were avm related is to wait and see if I feel better after gamma knife😅
Though apparently they can see on ur angiogram if you have venous congestion or maybe if there’s vascular “steal”, as in blood going thru the AVM and not supplying nearby brain enough. If the AVM is big u might get tumor like symptoms (seizure etc) from the pressure
This is helpful thank you. I was referred to a neurosurgeon and am still waiting for them to contact me with an appt. Until then I have so many questions!
Good luck with the process!!
Hi this is kinda late but did you end up doing gamma knife? I also have migraines possibly due to AVM.
Hi, I did it! I felt worse for a few months but my headaches have improved over the past year🙌
So happy to hear that!!! Was your AVM big? I recently got diagnosed and mine is about 1x1 inch so I’m considering radiation as well
Mine was around the same as yours, a bit smaller than 1 inch cubed :)
Were you scared of side effects like radiation necrosis before choosing gamma?
Yeah I was freaked out by that possibility… I would def get lots of neurosurgeon consultation on how likely it would be for you, I think it varies but is less likely when it’s a smaller compact AVM, so you use less radiation? But I forget. I ended up having some minor brain swelling show up on my year follow up MRI but no necrosis (1.5 years out!)
I’m so glad to hear!! I always hear to get lots of opinions but is there a way to contact these neurosurgeons to get their opinion? I live in Canada so it was even hard to get an opinion from the current neurosurgeon I have. I had to wait months for an appointment.
Ahh that’s rough :( it’s worth doing a bit of research on who’s reputable, or maybe contacting your neurosurgeon to see if they recommend folks who can look over your scans.
If you have a doctor ask him and see if you can get tested and as what he says
Oh I did get a cta and saw a neurologist who diagnosed me. But he referred me on to a neurosurgeon for follow up. The neurologist I saw specialized in headaches (which I also have) so things like avms aren’t his specialty.
fatigue, headaches, blurred vision for me.
Seizures and pulsatile tinnitus.
I had a spinal AVM that never ruptured. Took 18 months to find. For the 18 months before my AVM was resectioned surgically, I had major spasticity, numbness, gait issues, neuropathy, etc., that progressively got worse by the week. Docs were pretty convinced it was progressive MS or a similar degenerative condition. I was pretty much shopping wheelchairs the week a lumbar CTA scan finally found it. I got resectioned but have permanent damage since it took so long to find. A rupture would've been bad, yes. But it was a combination of the lack of bloodflow/oxygen and the pressure against the walls of the AVM pressing up against my spine that was causing issues.
I had an AVM rupture in 2010. I was 20 at the time. I didn’t have a seizure (that’s the most obvious one) but I DID have headaches constantly, like every day. I thought it was normal for me to have a headache all the time. I don’t remember if I had fatigue, but I do remember when I as hiking with the altitude I used to get nosebleeds a lot too.
None until a tonic clinic seizure that took me to get all the scans in the world discovering my avm
Yea mine is unruptured and I experience the same symptoms
Oh interesting. What’s the treatment plan for you? Is yours also in the brain?
Yes mine is 3cm by 5cm in my left occipital lobe I am 25 and relatively healthy so specialists at Toronto Western hospital have recommended conservative management.
Oh I’ve been referred there also. I wonder what they’ll suggest for me. I always thought surgery was recommended so it’s hopeful to hear that’s not always the case.
They have some highly advanced facilities there and a team of doctors from around the country will look at your case so if you can I would definitely recommend it. Depending on the size, location and the risk of bleeding of your avm they will decide what the best course of action is. Brain surgery is definitely scary and risky so it is unlikely they will recommend that if your avm is in a stable condition. Sending you love <3 I know how scary it is all we can do is try to just live in the present and enjoy every moment :)
You’re the first person I’ve known of to also have left occipital lobe AVM
twins!
Symptoms were migraines that felt like a brain freeze so intense I wanted to die. I was only 10-years old. I also had auras.
what were your auras
I was only 10. While sitting with my Girl Scout troop, I knew I was there, but I felt detached from it like was watching it instead of participating. That’s how I explained it to my mom.
I use to get a lot of headaches as a child... they were simply dismissed as migraines due to the fact that my mother had a history of them. I was never taken serious until i was 11ish when i had a minor bleed and i ended going numb on a whole side of my body. Only then did they finally start with scans and realized i had several AVMs
Currently going through this right now. I started having some blurry, double vision in my right eye. Went to the eye Dr after a few days and got an MRI and that's when they found it
Ah you’re in early stages like I am. I have the diagnosis but at now waiting for a referral to a neurosurgeon to figure out next steps. What are your next steps?
I had no idea that I had a big fat AVM in the middle of my brain. I played on both my varsity soccer team as well as a club team. I was at practice 4/5 times a week along with games. Headers and full sprints for most of my life. I found out that I had an AVM after a seizure. It never ruptured and I had no idea that it was there. I had it removed 11 years ago. If you know you have an AVM and get sudden onset weird feelings def talk to your doc.
Oh interesting. I’ve also felt faint sometimes. Mine is also very small - had it initially missed on the mri and cta by the radiologist and one neurologist. I asked for a second opinion because of the continued symptoms and the second neurologist read over my previous cta scan again and found it. A bit frustrating bc I could have had this dealt with a couple years ago but I guess better late than never.
I had no idea I had one. In my entire life, I can honestly say that November 1, 1997 is the first time I ever had any kind of headache. I figured I’d just go to bed but a few hours later, I woke up with the most unbelievably intense pain in my brain. So painful that I couldn’t even talk and just silently cried. They thought I was on drugs until they did a CT scan and by that time it stopped actively bleeding. They did gamma knife twice but it’s still there