Our Story finding out what an AVM is...Help? Advice?


the reason i joined avmsurvivors is my nephew. On March 5th he was taken to the emergency room. They said he suffered a hemorrhagic stroke. He lost movement in his right arm and leg. They did some ct scans and immediately after that he was flown from one hospital to another. They said he was being flown to have emergency brain surgery. Once he arrived to the other hospital they did some more scans and he was put in intensive care. No surgery. Later that day the drs explained to us that he had an AVM in the left parietal lobe. On the 6th around 2pm he had an embolization, they were only able to stop about 25% of the bleeding. Back to intensive care, and the headaches obviously continued. The drs said that they were going to wait 3 days to see if he got swollen and if it did they would continue with the surgery. He was able to move his right leg a little and still no movement on the right arm. Hes on painmeds so his in and out of it through out the day.He is able to speak, but he does have problems remembering his name where he is, sometimes he says one word but means another. Once we explain to him what day it is and his name etc he does remember it later on. When hes not on morphine hes exactly how he was before the stroke as far as his personality, he just has the trouble with speech and obviously the movement of his arm and leg. THe first 3 day days he was only able to have water on a sponge because they didn't know if it was going to his lungs or stomach. Yesterday they said it was okay for him to eat and drink liquids. On the 7th we were told he was going to have surgery on the 9th (today). They showed my sister the CT scans today and they said the avm is pretty large. We overhead the drs saying he was a 2 and thats when surgery should have happened, and now he is a 3. we have yet to confirm what his grade is. he is Still bleeding unfortunately. Now They cant do the surgery because of the swelling so we have to wait.

Im left speechless. Full of anger because i dont understand this process. We had no idea what an AVM is we had no idea this could happen, and im angry because it did. Its hard to see him in this condition. His birthday is coming up and when i asked what he wanted for his birthday he said "i want me". Hes a young healthy strong boy, i know he can over come this i know it. But the process of waiting and waiting for these drs to do what they have to do is literally a pain. I want..advice i want to know if there are any questions we should be asking? he constantly has strong headaches, we try to cover as much light and keep the noise down but is there anything else that can help with the pain besides medicine? Anything to help regain movement in his leg and arm? he does have some movement, the therapy is helping, Any Websites you recommend on reading? Has anybody had a complete avm removal surgery, how was recovery? what should we prepare for. We were told he had to be prepared to make accommodations. Is surgery being put off because his insurance case is being processed? will hospitals seriously let him bleed because they dont know if they will be paid off or not? Maybe i just need to vent or support, Maybe i just havent searched the internet enough but i havent found a similar success story or something that explains the process..I constantly have people telling me they "know how i feel" when they have no idea what were going through, and being a part of a website where you all literally know what we are going through it would mean a lot to me if you could please share your experience or thoughts with us.

Thank you.

Hi so sorry to hear about your nephew. My brother had AVM in his brain, before christmas last year, we too had never heard of AVM it was all a shock to his family, had a bleed and was shifted to another Hospital to stop the bleed and then he had the AVM removed 3 weeks later until the swelling went down, had a drain put in his head to get rid of the fluid after the drain was taken out he was not real good short term memory loss, and balance in walking them after 5 weeks they decided to do a Shunt since the Shunt he has a better memory and asking questions, but so much better then a week ago now waiting for Brain Injury Rehab. my prayers will be with you and your famiy god bless ..

Hi, my sons story
is very similar. He is 22 and had a bleed last October. He was transferred to another hospital and had an emergency craniectomy. He had 2 embolizations one the following the other a week later. He was in the hospital another 2 week then a week in rehab. He is still waiting for his skull to be put back, then he will have gamma knife sugery. His is in too delicate of a place for removal. He had some paralysis on the right side but he has recovered all of that function.

Every AVM is different and will need individual treatment. In the hospital they make many quick decisions. Ask lots of questions, if you aren't getting answers go up the chain of command or ask for a second opinion.

It's a scary time. Your nephew will need lots of support. He will probably have rehab and plenty of therapy. He is fortunate to have an uncle who love him so much. Take care!


I'm sorry to hear of your nephews AVM, you are like most of us and never heard of it until it happened to someone in your family. My AVM was discovered almost 13 years ago after I had a bleed. When your nephew is on the morphine it slows down his thought process so that could be part of the reason he doesn't remember some things. As far as him regaining movement in his arm and leg he should be able to regain most if not all of that once the bleeding and swelling goes down. (I had total left peripheral vision loss until all the bleeding and swelling was gone.)

Other than my family fighting for my care my biggest advocates were actually my nurses, if you are on good terms with them they take very good care of you and will usually fight the doctors for you since they see you 24/7 and can usually tell the Doctors your real condition.

As far as the doctors not performing the surgery due to insurance that shouldn't be the case, more than likely they are wanting the bleeding to slow down and the swelling as well that way it is a much safer surgery for your nephew with a shorter and better recovery.

Hope some of this information helps you.

Im sorry to hear this and its understandable to feel this way so early in this process.

I had my bleed & surgery when i was 31...healthy person never any issues until one day i had some major headaches and the rest is history. I think the waiting game is done for the safety & health of the patient. If they feel there is too much of a risk for long term effects etc they will hold off until it is safe to operate.

YES he will get through this and before you know it he will be here sharing his story with us.

As far as removal its been 2+ years for me and its a slow process that takes a lot of patience & positive thinking. I would say put your faith in God and let him do his work. Remember there may be a small price to pay for life but thats what it takes then so be it. He is still young and that will work to his advantage from my experiences talking with others and Dr's etc.

Keep us posted & sending prayers your way for him and the family.

God bless


Your nephew will be in my prayers. I also had an AVM on the left parietal lobe and had a massive brain bleed. The bleeding stopped and they couldn't do surgery because of it's location. Hang in there, I will pray that his bleeding stops and with therapy, he will do well!


There was a lot of great support offered in all the responses I saw. These members are kind, supportive, and understanding. You specifically asked for questions to ask the doc (it is comprehensive so feel free to sort through or edit them as you see fit), but go to: http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurgeon?xg_source=activity. Also we have a group on here for success stories at: http://www.avmsurvivors.org/group/s. We have a variety of other groups here that might be helpful to you too. Just click on the groups tab on the main page and check out what you want. If there is anything I can ever help you with (especially navigating this site), please let me know. Wishing you and your nephew the very best. :J

Hello. First off I am so sorry that your nephew and your family are going thru this. Back in Sept. 2011 my then 7 year old daughter Kennedy got sick on the playground at school. I left work to go pick her up thinking it was just a virus. When I arrived at school she was unconscious and EMS was on the way. At our local hospital after a CT scan we were told it was a brain bleed and was very bad. She was flown to another hospital about 40 mins. from our home where they performed an emergency craniotomy to relieve the swelling and pressure. They also inserted an EVD drain. We were told by her neurosurgeon that he believed the bleed was due to an AVM that she was probably born with. Tests later would confirm that. He told us she was critical. Her AVM was located in her left frontal lobe rather deep between her speech and language centers. We waited for swelling to go down and 20 days later he removed the AVM. After this surgery she could not move her right arm or leg and she had still not spoken. Thru therapy she started getting movement back. On Nov. 9 she spoke again and Nov. 10 the dr put her bone flap back on and we were off to rehab. She spent 74 days in PICU and 30 days in rehab. She learned to walk, talk, eat, everything over again. A year and a half later she is in school on a limited schedule and still attends OT, pt, and speech therapies. School is difficult now where it used to be easy. She still has right side weakness and still has problems with short term memory however she continues to improve. Her dr told us the first day this is a marathon not a sprint as far as recovery goes. I am still angry at times today. I still struggle with why my child. I hate seeing her struggle but she is here and I can’t imagine if God had taken her. I so miss the life we had before she got sick but as my husband says it is what it is. We continue to pray for her recovery and she continues to work hard. Your nephew can do this. It’s not what we would choose for them but there is hope. If I can answer any questions feel free to send me a message. Prayers! Kim

Hey. I had a craniotomy/AVM removal last year in January. I don’t know how you could make any of the pain go away now, but I had a grade three as well. It took me a little under a year to recover, but rehab wasn’t bad. My main advice would be not to talk to the ICU people. Doctors & especially everyone in the ICU have been super negative throughout it all, probably because they don’t want to make promises they can’t keep. I would just talk to the surgeon, they can give you the best advice. I made a full recovery, and I am slowly easing back into college life again. I can’t promise it’ll be the same for him, but that was just how my experience was. Keep up the hope.

Happy belated birthday to your nephew! How's he doing?

Take him to Barrow Institute to Dr. Spetzler or someone else with his group! The are some of the best doctors for avms. This is not something to allow just any doctor to deal with!!!!

Hi Cherrymonkey. I am so sorry about your nephew. Please click on the link that Suzy provided. It might help your family. You are in the early days of this ordeal. Yes…I know it feels like an eternity.
As I am sure you have been told that every AVM is different so every recovery is different. The main thing is not to give up! Persistence and patience and positivity!!! In other words…NEVER GIVE UP!
As long as your nephew is alive…there is hope!
Take the time to read this old blog…http://www.avmsurvivors.org/profiles/blog/show?id=1543517%3ABlogPost%3A435281&commentId=1543517%3AComment%3A442609
Almost 25 years ago I had my bleed. There have been HUGE medical advancements since that time.
No…insurance is not why the doctors are being cautious. Very few surgeons know how to deal with an AVM. We only occur in about 1% of the population. We are rare. Also, there are many complications that can occur from brain surgery. It is not like taking out tonsils.
I know you want to know that everything will be alright. What I can tell you is that you are no longer alone. 5300 members on this site understand how you feel.
You are now on my prayer list!!!

Hi cherrymonkey,

I wanted to leave you a comment but, I see I'm 7 days late from when you first posted this. How is your nephew doing? What's the update? Have his headaches gotten any better? Is there any improvement at all?

Please let us know and I'll help you the best that I can. I know this is scary and you have every right to be angry. It's hard not to be. Just try not to let him see it. Which I don't think you will.


Welcome to our family Cherrymonkey. This is a great place for support and advice and for venting, if needed.

I'm sorry to hear about your nephew. My bleed was almost 5 years ago. I had 3 embolizations followed by a successful craniotomy. It was nearly 3 weeks after my bleed. During that time I was in a coma for part of it and then I was kept in a medically induced coma. My surgeon wanted the swelling to go down and for my brain to just kind of "settle".

Like many have told you, every AVM is different, every recovery is different. And it is a marathon not a sprint. Patience is sometimes hard to have but essential in this process.

Your nephew has youth on his side. Young people often do very well. His youth and strength will work in his favor. Rehab can be difficult but is also essential.

I encourage your sister to join this site also. We have a subgroup just for parents. She may find great comfort being amongst others who know exactly what she is going through.

Tell your nephew that he has all of us here rooting for him and we look forward to him sharing his story with all of us.

Best wishes.