Has anyone with an erupted avm near the brainstem?

hi! Im a new member of this support group online. im very glad i found this website. it’s been more than 3 yrs. since i found out i have a congenital avm and it’s located near the brainstem and has aneurismic dilatations…
i wonder if anyone out here has avm in the brain? how did you deal with it?
before i was discharged from the hospital 3 yrs. ago, the neurosurgeon told me the three LESS that really shook me — LESS THINKING, LESS TALKING, & LESS WALKING. The 3 LESS that really disheartened me for these are few of the things i enjoy the most that even until now when i recall that moment, i really get discouraged.

at that moment, i crumbled and even complained for the AVM to erupt at the most unexpected and untimely part of my life… it happened when i have to graduate from college by April and a job was already waiting for me… sigh…

anyhow, i haven’t been seeing my doctor for more than 3 yrs. now. but i feel better, no more headaches, yet i’m a bit slower now especially with my left extremities. twas because the affected area when the AVM erupted was on the right partof my brain…

i’ve been contemplating of going back to school yet my family’s a bit anxious. they fear i might have headaches again or have the AVM erupt again… sighs…

will someone help me? i mean someone who can help me assure my family that i’ll still be fine… thanks a lot… God bless you alll…

Hi Jenirose,

I’m sorry to hear what is happening to you, I know it is hard.
My avm is in the back of my head, not sure how close to the brain stem, I will find all of that out today because I will see the doctor/surgeon today.
My story is a little different because I am 50 years old and I found out about my avm after I had a stroke two months before my fiftieth birthday. I’m sure I had it all of my life because looking back I had various symptoms that was probably caused by the avm, but it did not cause a stroke until I was 49. I usually want to know everything, but I am glad that I didn’t know this when I was younger because I would have been hesitant to live my life.
I say all of this to say, an avm can change your life and take you up and down emotionally.
My conclusion/beginning is, you have to live until you die.
Being cautious is good, but let your family know, no one, no human being can assure that nothing will happen to you.
Don’t lift or carry too much, consider yourself wealthy, the wealthy don’t lift or carry anythingLOL.
By all means, live your life, hey lets face it, if you are not living, you are dead.
Don’t die until you take your last breath !


I agree. I had a bleed near my brain stem 2 years ago, but there were no permanent deficits. The AVM is now gone. Absolutely you should go back to school. Why wouldn’t you? I’m assuming the AVM is still there and might rupture. If it does, you’ll go the hospital and deal with it then, but you’ll have to do that anyways. So you might as well be in school. Live life to the fullest. Do what you really want to do.

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My son’s is on his brainstem and he has lived through a major bleed. Just like you he has some extremities issues but is living life… You need to you own your AVM not the other way around. My son is 11 and it took me a while to realize that he needs to live. Your family will be nervous for a while but hopefully over time they will see that this is what you need to do for you. AVM survivors are people, please don’t sit around waiting for the next bleed that is not a life. My son and I have come up with a saying for whenever we are apart “Forever and always in your heart” the purpose of this is to remind each other that no matter where we are nothing can remove us from each other’s heart. Also their are tons of studies about quality of life for people who sit waiting for the condition to kill them or those that go out and live life to the fullest. This is what I had to accept for my son, I would rather know that I let him live life to the fullest and deal with what happens vs trying to put him in a bubble and lose him anyway. There are no study’s that show that any activity could cause an AVM to rupture. They will do what they want to do when they want. You can’t help them rupture and you can’t keep them from rupturing. Hope this helps.

Wow, Kelly, what an inspirational story of how you’ve dealt with the situation you were given.

My daughter has a avm in the brain stem and behind the brain stem.It was 5 or 6 centemeters. It has been embolized with 64 pellets and a glue filled balloon about 20 years ago. She wasn’t expected to live more than a year. She was 17 ish at the time. We were told there was nothing to be done. The doctors in NY said, no surgery and none of that new proton been stuff would help her.

We went against the doctors advice. I searched all over and found someone who would clip many feeder vessels, took 28 hours of surgery. Them we got the gamma knife. This was not done in many places at that time. That was 19

She went on with her life with a few deficites, no balance, double vision, but lived on her own very near her mom, (me) and dad. She had decided she wanted to live her life as she wanted and didn’t want to do any more with the avm. She lived on her own for all those years and chose not to be watch over by the doctors.

She visited everyone at the mall and did ceramics, and had many friends. She, of course had sadness, for her life wasn’t what she had hoped for but she went on as bravely and ever. She exercised vigerously at the local gym which I worried about greatly but I knew I had to let her do what she wanted.

Now we are into this for 20 years and she just had her 8th bleed. The vein that bled was the vein of galen in the brain stem. It’s the main drain vein. They say it’s so very enlarged and had a few aneurisms on it. But listen, It is now only 3 centemeters.

She will be striving to recover this last bleed, as usual, but until then she is back under mom’s wing. She was totally parallized and on the breathing machine for about 2 months and is now just beginning to walk after about 4 months. We are now looking for new fixes since the medical world has learned so much more.

My reason for posting this is that we have found that the very same thing that the doctors told us not to do, they are doing now. How times change when you can see the history. We need to find the best way to life our lives the best way we can till those doctors learn more. My daughter is a good example of that. She would have been long gone if we did what the first doctor told us.

Everyone has to make these decisions for themselves, even though the decider may be to very young to make these decisions. Now that she is older and is faced with this past bleed and has the aneurism in the brain stem she is wanting to try to get help again. Two reasons, the medical world has progressed allot over the last 20 years and she is more mature.

I have chosen to stand by my daughters decisions in life from the first day. I do believe that it’s my job to present as much info as I can to her so she can make the best decision for herself. I am getting the same thing I did 20 years ago, “There is nothing we can do for her”.

The moral of the story is, life your life as best as you can and make sure and wise decisions for yourself. You are the one who has to live with the results.

It’s been hard to watch my daughter, “almost” going white water rafting, riding a horse, and the worst was 12 years of hard exercise at the gym. That surely couldn’t have helped that avm. I will keep saying, this is what my daughter wanted to do and if it killed her while she was doing what she wanted that was her decision as an adult. Maybe her actions over all these years were good for they say is better off with her body being is such very good shape in her recovery.

I must say I am very tearful reading all your stories and telling you about my daughter but it is very good for all of us also. Sharing is good. Barb


The incredable thing about children is their resilience. People have told me that they are so resilient because they haven’t learnt how to give up yet. Our baby boy Myles was diagnosed with a ruptured avm in his brainstem when he was 2 weeks old. The avm was embolized using platnum coils and 5 weeks later we were home. During this time he spent about 20 days in ICU and underwent several procedures. Since then he had a shunt put in amd has basically gone ahead in leaps and bounds. He has learnt to roll, eat and makes an incredible range of sounds. In my opinion doctors will always give you closer to the worst case scenario than the best. Don’t give up and don’t limit yourself by what someone tells you (which of course- may never be the case). If you want any more info just ask.

Dear Jenirose, I am new to this group as well, in fact, this the first time I respond to a posting. I had a similar AVM in the brain that was removed surgically 11 months ago. I have not returned to work yet and can’t wait to return. My doctors don’t believe that I should go back as yet due to fatigue and trouble functioning on my right side, particularly my vision. My AVM was on my left and erupted during surgery. I believe that if you go at you’re own pace, listen to what your body is telling you about working, go back if possible. Can you start part-time? Your family only wants the best for you. Perhaps if you start slowly, their comfort level will improve as will yours. A job can be replaced, but not your health. Isn’t it frustrating how slowly the brain heals? But you are young and it will heal.

hello everyone… im very much happy with all the things you shared to me… pardon me if i can’t name everyone out here who shared their stories but i am very much inspired and overwhelmed with all these things you imparted. indeed, i have to live a life even with this avm. i know i this avm should not rule me out from living my life.

it’s been just recently that they allow me to go out on my own, yet most of the time, someone has to accompany me. they are indeed anxious yet for the past months, it has been a constant a struggle on my part to show to them and prove that i can do things alone. sometimes, they allow me yet i still have to work on their trust and confidence in me again…

again, i am very much grateful i found this site… thanks a lot to everyone for the support… God bless you all…