Newly diagnosed AVM, have lots of questions

Hi everyone,

I’m Rachel, age 38 (39 in Jan) and was just diagnosed with an AVM. I will be hearing from the Neurosurgeon this week. I’m scared and confused. If it hasn’t bled (I assume not) then what is the survival, treatable rate? Please tell me this isn’t a death sentence. :frowning:

hi rachel, this isnt a death sentence, speak to ur doctors. people live with avm’s forever, some never bleed. mine bled when i was 28 (four yrs ago) i had it removed (8hr open brain sergury) i was left with a weakness down my right side but i am well.

dont hestitate tob ask questions on this site.


Hi Racheal
I didn’t know anything about my avm until Oct 07 when it bleed. I have had 1 embo and i had a follow up angiogramm In June 07 and i recieved a letter a few months back from my hospital saying i’m avm free. They are all different ssome treatabloe some not but it is not a death sentence. You find lots of people here to chat to and help anyway we can, take care

Hi Rachel,Ive never had a bleed as well,and im 42,I had gamma for it one year ago,as a matter a fact,this is when i found out last year that I had this avm,didnt even know what an avm was till my mri/ct came back to confirm it,Ive been fine,it is treatable in so many ways,read everyones post when ever you get time,you will learn so very much,not to metion,you will get to know the nicest people you have ever met!!! welcome to the group, Caroline

Hi Rachel,
Everyone is different when it comes to our AVM,its best just to make sure you ask your doctor about yours, people on here have been VERY helpful to me and i am sure you will find out all you need to know in time. The one i have learn about having an AVM is that everything takes time, anyway welcome to the site.

Best wishes
Jerry x

Hi Rachel they cant operate on mine but I did get radationson mine is on the left side also. Don’t worry wait till you taklk to your doctors.

Hi Rachel,

Defintely not a death sentence, I thought the same thing when my husband was diagnosed with his. That waiting period between discovery of the AVM and what to do about it, is so scarey! He is now AVM free and has no real deficits. Depending on the AVM size, area of the brain, etc. your neurosurgeon will tell you your options. Once he does, check back here and everyone can give you more information. My thoughts are with you!!!

Rachel, AVM is not a death sentence, and it is hard to really know rates for you…it all depends on where, and how big/small you AVM is. Definitely go in with questions written down…and someone with you to also think of questions you may not. My AVM bledtwice-once I thought it was a migraine, and the other during a catheterization. My AVM was discovered after I had had a seizure-that was 4 years after my “migraine”. Several Onyx procedures later, and a craniotomy- I am doing VERY well!!! I feel so much better -I was always soo tired. Look up some of the treatment options-Onyx, gamma knife, radiation, craniotomy, etc. I know the waiting the worst part…You will feel more empowered with more info!! Hang in there!!!
Lee Ann

every avm is different, i was diagnoised with my avm at the age of 27 i was told my 12.5cm avm was untreatable and was sure to bleed sonner than later in my life due to the size and wear and tear…and that i could never have children…i serched and finally found a wonderful surgeon who completed very tricky 14 hour open brain surgery…and i believe saved my life…i am now on the long hard road of recovery…as when i woke from surgery i couldnot walk, or move my left side…since then i have learnt to walk again…talk… and now working really hard on my arm and hand…but i never lose hope…and remind my self how far i have come each day…i also have a little motto i call the 3 ps…persistance…patience and positivity…but as alot of others have said ever avm is different and each person will experience a different outcome some more simple than others…dependant on size…location and other factors

NO DEATH SENTENCE FOR ME am 18 month from treatment to a large avm on left frontal lobe went for checkup on 1st of dec and everything ok these hospital docs ect realy no there stuff be brave and good luck we all get scared xxxxxx

Hey Rachel… I know exactly how you feel. I just found out last night that I have a temporal lobe AVM and it’s kinda freaking me out… scared out of my mind!

Hey Rachel…don’t worry it is not a death sentence in the least bit. Treatment rates depend on the location of the AVM, etc so it is very important to talk to your doctor and make sure you trust him/her. They will be an important relationship to u as time goes by…other than that…stay positive, because you will survive it.=]

If you need anything don’t hesitate to ask…

Sebastian said:

Hey Rachel… I know exactly how you feel. I just found out last night that I have a temporal lobe AVM and it’s kinda freaking me out… scared out of my mind!

It’s not a death sentence. I was diagnosed in 1991-I had 3 brain surgeries(40 hours worth) and I’m still alive and kicking. I have 3 beautiful daughters and my life is normal- I have some deficits from my surgeries, but I’ve learn to deal with them. It is scary-I won’t lie-but you’ll be fine. If u ever need to talk or have questions, feel free.

Hi Rachel. No, an avm is definately not a death sentence. Put your faith in your doctors, they are the experts and will do whats right for your avm. My son, matt, 28, had a large inoperable avm, after gamma knife radiation to eradicate it, he was declared avm free december 08. we are all here to help, this is just one big family, so keep strong and onwards and up my friend. Here if you need me, Chris xx

Hey Rachel, I also was just diagnosed with an AVM Last week. I have been thinking it was migraines for the past 5 years! I totally know what your feeling, I haven’t been able to eat anything and I have been wrongly poppin my sisters adavan’s like crazy since i’ve known:) whatever helps right! I am so here for you if you need to talk to anyone. I am also FREAKING OUT!

Hi Rachel
Not a death sentence. I have known about my AVM for 38 years. The past five years I had embolizations and radiation. As others have said each AVM is different and it is best to talk with your doctors and write down all the questions you can. I am not cured yet but mine is large and complex located in the left occipital-parietal region. So far I have not had any bleeds. I wish you all the best and welcome to our group.
Lee Ann

Hi Rachel,mine has not bled as well,im 42,I had radiation a year ago for this and am doing wonderful,the avm is still there but does take time to shrink with radiation,alot of avm’s never bleed and survival is very good,I found out a year and a half ago and was just like you,i research everything i could about avm’s on the internet,you know what…the best learning tools are rite here on this site…no one knows better then someone with an avm,and this is the best and most loving group,ask question,read postings and know your not alone,this is not a death avm is 3cm in size left temporal lobe,no bleeds,no seizures,just headaches,some people have more,but some dont,we are here for you ok:)

Caroline, you goofball it’s me Rachel… this was an old post someone responded to. Did you think I was someone else? :slight_smile:
heeeeee :slight_smile:

Hi Rachel, My name is Heather. I was just diagnosed 2 weeks ago by an MRI and I see the neurologist tomorrow to find out where I go from here. I’m a little older than you, 42, but I feel we’re both still plenty young. I am a nurse, but not especially knowledgeable in the neuro area, my specialty is the heart. We’ll have to keep in touch. I’ll let you know what I find out tomorrow.