Hi, I am a new member of this undesirable club. My daughter (15) had a hemorrhagic stroke a few months ago. She was airlifted to hospital where multiple AVMs were discovered. Two were treated by embolization. She spent a month in ICU and is now at a rehabilitation day centre. She will have an angiogram this month to discuss further treatment. Needless to say it’s been a tough journey so far. I arrived here looking for information and success stories. She’s been told it will take a minimum of a year to regain intellectual capacity that being the last to fully recover.
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Hi Bibi,
I’m so incredibly sorry that you and your daughter are going through this unimaginable time. Please know there is light at the end of this tunnel. My son experienced an AVM rupture in August 2022 when he was just 14. He had facial droop, lost mobility in his left hand and arm, and his speech was also affected. He had to undergo a full craniotomy.
It was such a scary time—but after the surgery, we started to see improvement. He went to therapy weekly, and slowly, things began to return. Now, three years later, you would never know what he went through. His hair covers the scar, he has full mobility in his hand and arm, and his speech is back to normal. He still has a tiny bit of numbness in his hand, but nothing that limits him. The surgeon told us he’s cured and expected to live a normal life.
Hold on to hope. Envision your sweet girl doing all the things you’ve ever dreamed for her. Speak life over her journey. Remind her to stay patient and determined. And for you—try to develop tough skin, because recovery is long and sometimes frustrating. There will be slow weeks, even moments that feel like setbacks—but then, out of nowhere, something will shift, and you’ll see progress.
I believe she will be okay. Sending you so much love, strength, and prayers.
You’re not alone. 
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Thank you. I need to believe she will be ok. So far she been a trooper. But knowing it will be a long road with unknowns has been a bit hard to swallow. I am nervous about the upcoming surgery and not knowing if she will need a craniotomy or not. We’ve been told that it is much riskier and recovery is longer. For now she has regained most of her left side vision and 80% strength in her left arm. The cognitive effects remain for now.
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I completely understand the fear you’re feeling right now — it’s overwhelming, and AVMs are serious. But please know that medical advancements have come such a long way in the treatment of AVMs.
After I hit send, I realized I should have shared something important with you: most of my son’s recovery progress happened within the first six months after his surgery. His craniotomy was on August 12th, and he was able to start his freshman year of high school that September, right on schedule.
I don’t want to give you false hope — every case is different — but I do want you to know that this is possible. Recovery can happen. Progress is possible. Please hang in there.
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Hey Bibi,
I can empathize with you. Please give me a few days and I will reach out to you. I am getting ready to attend my son’s graduation.
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Hi @Bibi
I assume she is doing some physiotherapy and some occupational therapy: I have thankfully avoided needing to go through such things but good PT and OT seem to me to be critical to good recovery from these things.
I can tell you we have many parents with good stories to tell about their child having a craniotomy. With luck, you’re already going through the most difficult part.
It seems unusual that the doctors are especially concerned about a craniotomy: in the US, it appears to me to be the preferred mode of treatment, often allied with some preliminary embolizations, so on the face of it, she is doing much the same as others, though she is clearly less well than many.
Have the doctors offered any alternate courses than the craniotomy? Sometimes if an AVM is in an especially difficult to operate space, the embolizations and/or stereotactic radiotherapy are proposed instead.
However we can help you to rationalise what is going on, we can try. Just let us know.
Very best wishes,
Richard
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Hey Bibi,
I want to give you some hope. My youngest son who was 19 had a small bleed in our hometown and was life flighted to the Mayo Clinic. He had another bad bleed while in the hospital and spent 24 nights in the ICU. He had an angiogram, embolization and other procedures in the hospital. He has an AVM that is 4.8 cm in his Basal Ganglia. We have now had 2 rounds of Gamma Knife that were completed in the last couple of weeks. This all started back in mid October and has been a nightmare. No parent should have to go through this. I can tell you that our son is doing well. He is back in school and actually made an A in his college statistics class. The goal of radiation is to obliterate the AVM so that it will not cause bleeds. We now have to sit back and wait to see how the radiation works. It could take 3 years for this to obliterate the AVM. Surgery was not an option for us. Much prayer and God’s healing is why we are where we are. It is still difficult to go through this with the anxiety that all this brings my wife and I. I pray you will receive the same blessings we have received. Please let me know if you have any questions. Modern Medicine and God’s healing touch are a powerful combination. Please stay in touch !!!
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Hey Bibi,
What is the size and location of your daughter’s AVM’s?
Hello everyone, thank you for your responses. She is receiving PT, OT, sessions with a therapist and speech therapy. The 2 ruptured AVMs are right parietal lobe. They were embolised. The surgeon decided not to tackle the third one because it is very close to the brain and he was already 4 hours in at that point. They are 98% done so need to be addressed as well as what remains.
Since the rupture happened on holiday we have now been transferred to a new unit close to home. I suppose the concern of a craniotomy at that moment in time came from the emergency team.
It’s a bit of a mental challenge I have to say. You think once you come out of ICU alive you are on the road to recovery only to find out the road is winding and filled with many obstacles. I had never even heard of AVM before this, my daughter never had any symptoms at all.
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@Bibi this is very much the way in which about half of us discover our AVM and a good proportion of people go through very much the same as your daughter: an initial operation to control the bleed and a later operation to address any remaining risks. It’s very much a pattern that maybe a third of us follow, so you are not alone.
If there are any questions or concerns, feel free to talk about them. We are all people like you or like your daughter: patients or carers or friends who are going through this unwelcome diversion from the path we thought we were following and yes, it is difficult to see what is coming around the next turn in the undergrowth. We can share our own experience of doing similar things and for those of us who are crazy enough to hang around here for a number of years, we may be able to share things like “this seems pretty typical” or “that seems less usual” through reading here or reading other materials. I hope we can reduce the burden for you at least a little.
Very best wishes,
Richard
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Hi Bibi,
I’m so sorry to hear about what you and your daughter are going through. As a mom, I worry, and pray, that AVMs are not hereditary and that my kids won’t have them. I have a right temporal lobe AVM which had ruptured about a decade ago, and God has blessed me with 2 beautiful kids since then, even with the AVM. To say it’s very difficult to watch your child go through something like this, the uncertainty and the sheer magnitude of such a condition, is unfathomable for both of you. I’m sure she’s a fighter (sounds like she’s been a champ so far!) and will pull through with flying colours.
Where I can empathise and relate, is that my 9 year old daughter has a rare congenital condition with her one eye. She was a toddler when I picked it up and when we went to her paed, I did not expect to hear that. I cried for months, and although I’ve spoken to her about it in a light manner, as she somehow taught herself to compensate for it and I did not want to bring any form of self consciousness to her, when I see it sometimes, my heart aches. I’m sure your daughter can feel your love. Scratch that, I know she can. Rest is good for her now (and you might feel like you’re climbing the walls), but she’s lucky to have you as her mom. I say this just by reading what you wrote and it speaks volumes.
I can’t say don’t worry or stress, since mom’s do anyway at the best of times and in such a situation, the worry and fear is unimaginable. Whilst I worry and pray my kids don’t get it, you’re in the middle of it happening right now. I will keep you both in my prayers and if you need to vent and just need an ear, please feel free to message me.
Mother’s don’t give up, no matter how hard it is, and as much as I think your daughter is strong and a fighter, she must have gotten that from you. In the midst of all this uncertainty and fear, please hold on to your hope and positivity.
Please keep us posted when you can about how she’s doing.
Best wishes to both of you!
Suraya
Hey Bibi,
What you are going through is so hard on both the patient and family. I experienced euphoria when I realized my son would live after a very difficult time in the ICU. You feel relief. However, the AVM is still there and must be treated. We chose to do radiation as it seemed to be the best option. We have done the 2 treatments and are now in the waiting period. This can be hard. Anxiety and depression can take over. We have had a wonderful support group. Kind words, texts and prayers have encouraged me on some very dark days. When I feel like I am having a pity party, I look at the miracles that I have seen that God allowed to save my son’s life. Also, as bad as all this seems for all of us, there are people in worse shape than we are. I feel like I need to seek those who are struggling and speak encouraging words to them. That is the least I can do for all that has been done for our family
Hello Suraya, thank you for your message. I too am concerned AVMs are hereditary. I have 2 other children and would like them tested for peace of mind. However I’ve been told their chances of having an avm are the same as any other person, in other words not hereditary. My daughter having several AVMs should get tested for HHT next month.
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Hi, thank you for your message. My daughter is very grateful she is alive and does know there are many more people worse off. She is one a few in her rehabilitation group that has no visible handicap. Whilst that doesn’t necessarily mean she has an easy ride, it puts things into perspective for her. As a parent the stress and anxiety so far has been overwhelming to say the least. In ICU you go hour by hour at first, then eventually day by day. Once we got home another type of stress overcame me. She is now home and not monitored any longer by medical professionals 24/7. We have a good support structure but this is what many people didn’t understand. Once at home it wasn’t ’better’ or nice to sleep in your own bed. It was another challenge that started. We are now preparing for the next angiogram next week that my daughter would like to result in embolisation but we will only know the treatment options after the angiogram.
i had an AVM rupture in my brain stem 4.5 years ago. i was hospitalized 70 days. The rupture cannot be treated at this time due to location. the road to recovery is long. it does take work! the body and brain are amazing. I have been able to return to work part-time. I have ups and downs but recovery continues. Physical, emotional support and prayers from those around me have helped tremendously. I am very sorry she had this happen. Better days ahead!
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Currently waiting for the medical team to take my daughter to theatre for her angiogram. I’m hoping embolisation will be possible. What a waiting game this illness is on so many levels.
Does anyone have side effects from Tegretol? My daughter has spots on her face but also joint and muscle pains. I will speak to her doctor but was hoping to read about the alternatives and their side effects. I read that Keppra can cause fatigue and she has enough of that as it is. Thanks
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Hello Bibi,
I m sorry for what your daughter been thru,
I hope she is better now…
Can I please ask you if she had any side effects or complications from embolizations?
How is she feeling now?
Also, where in the brain are her avms?
Thank you
Hi, she had no side effects or deficits from the embolisations. Her AVM was parietal right.
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