Quantcast

AVM Survivors Network

New member introduction - Ryan

New member Here. My name is Ryan. I’m 28 years young.
I was diagnosed with an AVM in my left temporal lobe after having a siezure last December of 2019. I’ve already had a few MRI’s and a cranial angiogram a few months ago. I go in this wednesday to discuss the possibility of gamma knife surgery.
would love to hear others input on gamma knife success/complication stories.
also one’s particularly in the temporal lobe. Anything helps. (my AVM so far is unruptured and i hope to keep it that way) :crossed_fingers:

1 Like

Not trying to freak you out but my AVM did rupture. I didn’t know I had one when it happened. It did affected part of my temporal lobe but also the parietal lobe and some of the occipital lobe. It’s a long story. I surprisingly didn’t have gamma knife. I ended up having craniotomy for the first surgery to remove the blood clot. I kept having seizures after the first surgery so they did more test and found 3 very small blood clots in different areas. So the next 3 surgeries were laser surgery.

1 Like

Thanks for the reply. I’m glad you are still with us!
I’m very thankful to have found this before a rupture. I’ve changed my lifestyle alot trying to keep my blood pressure down and reduce my chances of a rupture. if you don’t mind me asking a few questions. What were you doing when you had your rupture? Have you noticed any changes sense the rupture/surgeries? also were the laser surgeries for the clots successful?
on a side note very nice buck you got in your profile picture, i’m an avid hunter as well here in Montana.

1 Like

Well my rupture happened way back in 2000 when I was 10. Was lucky at home with the family when it happened. Mostly what I remember was having a bad headache on my left side. The rupture started and then I lost control of my right side. Pain got so bad I blacked out. Family picked me up took me to the hospital they then airlifted me to Louisville Kentucky. That’s where the story begins. I had emergency surgery to stop the bleeding. They told my family they would have to wait for the swelling to go down before the next surgery to remove the blood clot. I had 2 months of every type of therapy and after constant M.R.I scans was of to surgery. After a month was finally sent home but I kept having small seizures. the next year my doctor in Louisville then told me to go to children’s hospital in St.Louis. They did some More MRI Scans and EEG tests. That’s when they found the other 3 small blood clots. So 3 more surgeries. After that went an entire year without a seizure. They then tried to take me of my meds but had a big seizure when they tried it. They figured it’s because of the multiple gaps from the surgeries. The pills direct the brain cells. You could say it’s like a stop light. If I don’t take the pills all lights are green and the brain cells crash. As for my physical health it’s great. They only problems I have bad right peripheral vision. As for memory it’s a blessing and a curse. Hardly anyone notices my memory loss it’s not bad but when having to multitask it’s a little tricky. So it looks like I’m not paying attention but I’m trying. My boss understands it because he new me when this all happened.

1 Like

Welcome! I had an AVM in my left temporal that ruptured in May 2016. That’s when I found out had one and what one was. Took me a little while as the memory was a little iffy for a while. Fast forward 6 months and I had Gamma knife, November 2016. In February 2019 I had an angio, after a yearly MRI and was pleased to learn the AVM was obliterated.

I had few complications with Gamma knife, some fatigue, “ice pick” head aches for a while and some weird feelings. I chalked it up to the radiation doing its job. The time went by quite quickly, specially now looking back! Overall it was a positive experience with gamma knife, some concerns of a re-bleed especially early but slowly went away and I just got on with things. Take Care, John.

1 Like

gamma knife really isnt that bad. when they say the device feels like wearing a tight hat thats exactly how it feels. the strangest thing from mine was i would feel little lightening strikes in my head every now and then for about a week afterwards. not all the time just randomly.

also your gonna look like a ninja turtle the day afterwards. but it goes away in about 2 days

1 Like

so you felt yours pop as well. ill never forget that feeling

thank you for sharing your story!

thank you for sharing your experience. i’m nervous for the procedure if that is what we end up deciding. But it sounds much less invasive than a craniatomy.

Hey Ryan! Welcome! Just wanted to tag onto this post, I’ve had gamma knife multiple times. It really is a cinch compared to a shuntectomy, a craniotomy, or a shunt revision. Just zap zap and you’re done. Very minimal recovery. If the doctors have that option, I would go for it. But, be aware, if they do not get the AVM in it’s entirety there is a risk of bleed. Furthermore, if they do not zap the whole AVM nodule, it can in very limited circumstances regrow. I don’t want to scare you but I also don’t want to unaware. And this comes from someone who was told the remaining AVM nodule was fine and it instead bled after the fact. Furthermore I ended up having a craniotomy and shunt revision too. Trust your treatment team, but you are your best advocate! Blessings as you continue!

1 Like

Surprisingly I rarely ever have headaches now. The side where they did my surgeries felt numb for a year. Also I could feel my head beating pulse every now and then. It didn’t hurt but felt weird.

1 Like

I don’t want to scare you, but I’m not sure how much lifestyle changes prevent an AVM rupture. Everyone I know who’s had one was doing nothing out of the ordinary when it occurred. My daughter had just had her haircut and was riding in my car. A friend’s daughter was playing catch with her brothers. Definitely ask your doctors about this but I think if it’s going to burst, it bursts. That said there may be some specific activities to avoid such as deep diving or extremely heavy lifting. I hope you get some good answers and can start your treatment soon. A lot of people have experienced great success after GK.

1 Like

its really now bad at all, the angiogram they did was the worst part to me. putting the device on wasnt painful at all. i had mine done in feb of 19. so ill answer anything you got. i got pictures of it all as well.

1 Like

yea i dont get them as often anymore either. the real sad thing is, ive learned to function with a migraine like nothings wrong from all the headaches ive had.

1 Like

yea i was sitting on the couch when i felt mine pop, and im a healthy guy. i watch my food intake, i meal prep, i go to the gym. its all when god says its time for it to pop it pops and life changes

2 Likes

i understand that. i think the biggest change i’ve made that could directly affect it is quitting smoking and drinking cause those could be direct links to thinner blood and higher blood pressure. I fully understand what you mean tho. thats the scariest part of this whole ordeal so far is not knowing if i go to sleep, whether i’ll actually wake up the next day. i probably will have a few questions for you. nothing comes to mind right at the moment but i will address them as i think of anything. thank you for all the input!

1 Like

no problem man, i definately toned down my drinking, i may drink one every few months. but just one beer or so. just message me with whatever comes to mind

2 Likes

I think quitting smoking and heavy/heavier drinking is a good way to go no matter what health problems one might have. Good for you! I lost a neighbour last year who had just turned 65. He’d had a bad heart attack at about 58 but never quit smoking. Last year he had a massive stroke and was gone 2 days later. It made me wonder if he’d still be here if he’d quit smoking. Very sad.
Anyway, I’ve often wondered how things would be different if we’d known about my daughter’s AVM before it burst or if we’d learned it was untreatable after the rupture which is sometimes the case. Wondering all the time if it was going to burst would be very hard. Hopefully you’ll get a really good plan in place for treatment and in a few years this will be behind you!

2 Likes

I was told by the ER neuro consult to quit any smoking, drinking, chocolate, caffeine… anything that might spike my blood pressure. I did so and it helped to take the pressure off for a while.

My AVM was a DAVF – a fistula in my dura mater and quite high volume – and I feel it was developing quite rapidly, so quitting the stimulants (mostly coffee in my case!) worked a treat for about a month but as the DAVF grew, I got dizzy again.

Anyway, I do believe as a self-help measure that cutting out stimulants is a good thing. There’s not much else we can do while we wait!

Hope this helps,

Richard

1 Like

thank you :pray: