In December last year my son was diagnosed with an unruptured right parietal lobe AVM. It was discovered after he had an MRI for an unusual migraine attack (he has suffered from migraines since he was 7) Since the diagnosis we have had an appointment with the neurosurgeon and he has undergone an angiogram. We will be having a follow up appointment to discuss the course of treatment. We have been told he will most likely be having surgery to remove the AVM, which is very scary but honestly I don’t want this AVM in his brain! Our obvious concerns are the deficits he may face after the surgery. It’s all just so unknown and frightening. If anyone has a similar story with a positive outcome I would love to hear it.
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Hello Tarryn,
My 15 yo daughter had a right parietal rupture a year ago. We didn’t know she had an AVM as she was asymptomatic. All avm’s are different and treatment will depend on many factors but I will say that all her deficits are from the rupture. None from any of the several surgeries she has undergone. It’s a scary road but keep in mind that a planned surgery whether it’s embolisation or a craniotomy is a controlled environment where the surgeon knows what to expect and has a plan. Treating a rupture is a whole other story. From my experience the surgeon will be cautious and if removing too much of the AVM will result in a deficit he/she will be unlikely to proceed with that.
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That’s a great and practical answer. My husband had a rupture with no knowledge of his avm. The deficits are many from the rupture. It seems so practical what you are saying that under a surgeon’s care and guidance would be the best way to care for an AVM.
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Hi Tarryn,
I’m so sorry you’re in this situation with your son because it certainly is very scary.
I would echo what someone else said in their response — a planned procedure is very different from an emergency surgery.
In 2017 my daughter had an AVM rupture at age 10 and that was how we learned of her condition. The rupture was severe & required emergency surgery and more procedures over the following months. The bleed caused a hemorrhagic stroke requiring several months of hospitalization and years of rehabilitation therapy.
I’m not saying this to scare you but to say that I hope your son’s AVM can be successfully treated and that he never has a bleed.
My daughter also required a 2nd surgery about 14 months later to remove residual vessels (not uncommon after a rupture), so we actually experienced both an emergency surgery and a planned one. The difference was enormous. She was only in the hospital for a few days for the second one and the biggest symptom to manage was fatigue. Her AVM was not located in the same area of the brain as your son’s though.
I’m sure the surgical team will prepare you with regards to what kind of setbacks to expect post surgery. He might require some in patient rehabilitation or it might be out patient.
Ask a lot of questions at your appointment and take the time to make notes. I know your son is a bit older than my daughter was, but no doubt he’s anxious and has questions. Ask if there’s a Childlife specialist at the hospital that he can speak to before the surgery. They are amazing at explaining things in a way that’s appropriate for the patient’s age.
As frightening as this diagnosis is, learning that it is treatable and being able to remove the AVM before a bleed has occurred is wonderful. I hope his surgery goes very well!
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Hi Tarryn.
If I may I just wanted to give you an alternative picture. My AVM showed itself when I was 14 and it caused severe hydrocephalus. At the time MRI scans weren’t widely available (this was in 1987) and docs thought it was a ‘birthmark’ on my brain. 15 years later I found out it was an AVM. However based on its position intervention is risky for me and I have always been advised not to do it. My AVM doesn’t give me many real issues from day to day. Yes I’m always aware I have it and what could happen to me one day. I just try not to think about it and keep a positive attitude. So far this seems to have served me well. I’m not saying you shouldn’t consider surgery for your son. That is a decision only you and your family can make. I’m just saying that some of us do live long-term with AVMs and they won’t necessarily cause problems. Best of luck.
Lulu
My AVM discovered before it ruptured. I had it surgically removed and I’m totally fine now. No residual issues. I live a normal life. Here’s my post surgery post. I no longer have the symptoms I mention in that post.
You’re lucky to discover it before rupture. And if your doctor is hinting at surgery being an option that is likely also a positive. If the AVM is too big or in a tricky location the decision to excise it can be trickier.
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Thank you for all your responses.
My son had his follow up appointment after his angiogram and it turns out surgery is no longer an option. The draining vein of his AVM is too deep and presents a high risk of rupture during surgery.
They are now looking at possible gamma knife surgery if he meets the requirements for this.
It does now mean that we continue to wait, because we have been told he can only undergo gamma knife when he is 15/16 years old. And then still have to wait the time it takes for the AVM to be obliterated after the radiation.
The waiting is the hardest. We are positive and have tried to view things in a positive light but knowing he has something in his body that could potentially seriously harm him is hard.
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Hi Tarryn,
I understand that waiting is hard, but I can also understand why the team is wanting to wait. My AVM (right prefrontal cortex) ruptured when I was ten. I had the Gamma Knife surgery six months later. Five years later they discovered residual blood vessels. They treated me with the Gamma Knife for a second time when I was 16. Then at age 24 I had a second brain bleed, and I learned that the AVM had grown back during puberty. As I wasn’t a candidate for other surgeries, I had a third Gamma Knife treatment. My doctor says that I am only the third patient he has had to operate on three times.
My deficits have always come from the bleeds, not the surgeries; any side effects from the radiation cleared up quickly.
In hindsight, I wish I had waited to have my first surgery as it might have saved me from needing a third treatment. I am currently in my fifth year since my third treatment, and I am still waiting to confirm obliteration.
Bleed symptoms to look out for are a splitting headaches and neck pain. At each of my bleeds, my neck felt “sloshy” with pain. Know that all of us at every stage of our journeys are taking it one day at a time, and you’re not alone!
Love, Julia
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I had a right frontal AVM, which was removed through craniotomy in 2011… I am living proof, along with several others here that there is light at the end of the tunnel… in fact I would go further & state that technology has advanced so much more since my surgery that this may even be easier for the medical team than what it was when I dealt with this 15yrs ago… God bless!
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