My son is having an angiogram with possible embolization on 3/27 and surgical removal of brain AVM on 3/28. We found out he had an AVM when it ruptured on 1/16. Since then he was in the hospital for a week or so then was at an inpatient rehab center for about 4 weeks due to left side hemiparesis from the rupture. He’s been going back to school the last couple of weeks and is in a good place. I’m getting increasingly anxious about the upcoming embolization and surgery as the surgery date looms (even though it’s the correct course). Has anyone had experience with pediatric embolization and/or AVM removal? Did you have any new deficits after the surgery? Anything else that would be good to know that you want to share?
We have a bunch of @ParentsAndCarers who have gone through the same as you and your son with their own son or daughter and we all know how you feel about it all! As one of those who is the patient myself, I know that those of us who are the patient would rather be so than be the parent of a child going through this! I know my wife had a much worse day than I did when I had my embolization just under 8 years ago.
In terms of what to expect, it is difficult to know. Some people come out like nothing has happened and other people have a more difficult time: it very much depends on the situation at hand and the skills of the neurosurgeon.
Feel free to ask about any of the aspects that we might be able to share our own experience with, because we can certainly help with that.
I think the thing I learned from others here was that some effects that you might get post surgery are just temporary: a craniotomy is clearly an invasive procedure and I assume that things get irritated, there’s some swelling that can occur and that swelling can cause random things. Once things have calmed down, a bunch of side effects will go away, so if he wakes up and something’s not working, the key takeaway is not to panic, not to think that life has taken one of the worst possible courses because until things have settled down, there’s every reason to think any unwelcome side effects will be temporary. I have read here of people waking up unable to move, unable to see, speaking foreign languages – all sorts – and it has just been the random roll of the dice that has temporarily given those symptoms.
So trust the process and don’t panic if it looks difficult.
For myself, I had just an embolization procedure. I had “quite a lot of glue” injected into somewhere near my right transverse sinus, including a bunch of draining veins and got fixed in one sitting first time. It was ok. I had a decent headache and my mouth tasted of the solvent in the glue but it was a wholly doable thing. My doctor indicated beforehand that he might take two approaches to sort me out but in the event was convinced he’d got me fixed 100% in one [~4h?] sitting. As it turned out, he got me done in one go but my experience of it was such that I took the view that if I’d needed to go through it twice, that would be fine by me. Fear of the unknown is a big, big thing.
Let us know anything we can help you with. I hope one or two craniotomy patients can share their experience as well. Craniotomy with embolization(s) is undoubtedly the favourite method used in the US. It is very widely used and very successful.
Hi there,
3 years ago my 15yo son had multiple angio+embolizations followed by a removal from his left occipital lobe. We found the AVM via MRI after a particularly bad migraine. It had not hemorrhaged. I’m quite happy to share and help you mentally prepare as much as I can. Is that though this group? Email? Phone?
Bottom line, my son is thriving. Finishing his Freshman year at Penn State in astrophysics. He has a permanent blind spot in his vision due to the AVMs placement, but he’s found ways to compensate and it hasn’t slowed him down. With the science and medicine available now, there is so much reason to remain hopeful.
As for what to expect for the actual procedures, let me know the best way to talk with you. I know I got through it with help from people on this message board!
-Heather
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Firstly, I want to say that we are thinking of you and sending positive thoughts. I know how unbelievably difficult this all is.
Our daughter had pretty much the exact same treatment that your son is going to have. This was almost exactly 3 years ago when she was 11. She’s now 15 and doing all the things you expect from a teenager. So what I’m saying is, both procedures were successful and most certainly the right thing to do.
Our daughter is now in year 10 studying for her GCSE’s and is doing great. Even after missing lots of year 7. I really hope this is helpful. Happy to talk more x
First, I am sorry to hear about your son’s AVM. But it is good to hear that he has been doing well lately. My son is also 11 and has an AVM that we found incidentally after a concussion. So far, he had had two embolizations and will be having a third and final embolization with a craniotomy to remove the whole thing in couple of weeks. So far, the embolizations have gone well with no serious side effects or issues. He does have headaches occasionally now but they don’t last or interfere with daily life.
I can relate to the anxiety about the upcoming surgery. It feels surreal and I just keep trying to focus on the positive things such as the amazing abvances of modern medicine to treat these conditions. As well as the many stories of kids being resilient and overcoming this with a positive outcome. So even though our story is still unfolding and I don’t have much to share in way of experiences, I will be praying for you and your son and I hope you find some this place as helpful as I have.
With you as we all know the feeling of the AVM shock news. My son’s AVM was discovered in July 7, 2023 after he suffered a scary seizure at home while we were eating dinner. I think I went numb for a few months until my son received treatment. Even after treatment there was the adjustment to circulation inside my twenty four year old son’s brain. He still gets numbness on his right side due to left side AVM. They were to do Embolization and Craniotomy on January of 2024. He successfully received Embolization on January 16, 2024 and Craniotomy on January 17th but it did not move forward because Neurosurgeon feared he would leave him paralyzed on right side while he was inside his brain in the operating room . AVM was closer than he thought to his motor cortex. He stopped the surgery. In March 19th, 2024 he received Gamma Knife treatment . Its been a nightmare roller coaster but things are looking better for my son. Trust me that all of us know how you are feeling. The Embolization for my son has helped as he doesn’t get the Auras before seizures he suffered prior to treatments. Now we wait for Gamma Knife to do its job with some peace of mind. Angiogram was not a big deal other than take care of his entry wound. I agree with @DickD that there is a smell to Embolization I did not detect but my wife did. If Embolization is done by an expert then it should not be difficult or have any side effects. I can’t share with you about the Craniotomy as my son did not go through it. Trust me that we all understand your concerns and sleepless nights. I think I looked 10 years older with all the worrying but things should get better and we’ll be praying for you and your son.
This is such a hard place to be!
My daughters AVM was detected prenatally. She had a craniotomy at 4 months old.
At 6 it returned and it was monitored for a number of years until she was older and became more symptomatic. At 15 she underwent her first round of gamma knife. She had severe side effects (lost use of her left hand, uncontrollable seizures, horrible mood swings etc)
We never got around to continuing treatment because she was too unstable and then we lost out of state coverage.
It’s been two years now she doesn’t want to contact with the gamma knife because she’s concerned about how it might else impact her ability to function.
Wishing you lots of luck, strength and patience during this time.
Thank you for your response. Sorry to head about your little guy, but glad to hear the embolizations have gone well. I too have heard of kids being so much more resilient with these type of things and recovery being so much easier than if you were an adult. I hope your son’s surgery goes well and I’ll be thinking of you guys as well. Once my son has his surgery, I can follow up on the board to share our experience and how he is doing if you would find that helpful.
Thanks for replying and your kind words. I am so sorry about your son’s experience with the AVM. I am glad he is doing better and hopefully the radiation kicks in to get rid of the AVM.
Thanks for your reply and kind words. I am so sorry to hear that the AVM came back and she had side effects from the gamma knife. I totally agree, it would be hard to want to do the gamma knife treatment again when she’s experienced the side effects that she’s had.
Like I say, if there’s anything we can help talk through with you, just say. This is what we are here for.
My embolization was 8 years ago next week. I wasn’t happy about it at the time, it took me a long time to feel better afterwards, but can I tell you that I’m absolutely fine today (and have been so for many years). There’s nothing I do that has been limited by my AVM: it is a closed chapter behind me.
I’m crazy enough to hang out here because I hope by sharing our experience and by ensuring that this place is a friendly, supportive meeting place, I can help others have a better time through their diagnosis and “journey” than when you just worry about every possibility! Because we all know how easy it is to worry about every possibility!
Just wanted to give you all an update. My son’s AVM was successfully removed today and he’s in the PICU recovering. It’s such a relief to have the surgery over with. Thank you all for your kind words and prayers. So far he seems good other than some head pain and nausea and scratchy/sore throat from the intubation.
Oh my awesome news about your son’s successful treatments! We send you our best wishes as he recovers and goes back to his life as a kid deserves. Keep updating us!