My 11-year-old son was recently diagnosed with a ruptured AVM in his left parietal lobe. His symptoms first appeared in late December 2024, but due to NHS delays in approving an MRI/MRA, we had to get the scans done privately, meaning he was only formally diagnosed last week. His AVM has not yet been graded.
From my understanding, most AVMs in the UK are treated with Stereotactic Radiosurgery (SRS). However, I am wondering if surgical removal (craniotomy) would be a better option for him. I know there are pros and cons to both approaches, and I’d really appreciate insights from parents who have faced this decision.
My Concerns & Comparisons
SRS:
Can take up to 5+ years to fully obliterate the AVM
Obliteration rate is about 65%
Risk of re-rupture while waiting for obliteration
Even after obliteration, there is a 1% annual risk of re-rupture
Potential side effects from radiation
Craniotomy:
Works immediately with a 90%+ success rate
Post-surgery re-rupture risk is lower (0.35% per year)
However, in children who have already had a rupture, there is a 20% risk of AVM recurrence
Risks of surgery itself (neurological damage, complications, etc.)
If we decide to pursue surgery, we are seriously considering taking him to the US for private treatment. This would be a massive financial commitment (likely requiring a remortgage and using all our savings), so we need to understand all the risks and costs involved.
Questions for the Group
Has anyone here had a child with a ruptured AVM undergo surgery vs. SRS? What was the outcome?
What is the approximate cost of craniotomy in the US? I know it varies by complexity and hospital, but any rough estimates would help.
For those who travelled abroad for AVM surgery, how often were follow-ups needed? Would we need to return to the US multiple times, or could follow-ups be handled remotely?
If your child had craniotomy, did they require long-term rehab or neuropsychological support afterwards?
I’m currently reaching out to the Barrow Neurological Institute with my son’s scans to see if they think surgery is possible. In the meantime, I’d really appreciate hearing from anyone who has gone through a similar situation.
Thanks so much in advance for any advice or experiences you can share!
Welcome! I hope we are able to help you and your son out. We have a tremendous amount of experience here. You and your son are still really early in the AVM journey. My AVM was discovered when it bleed, I was 48 years old. It was a left temporal Grade II on the inner side of the lobe. I had Gamma knife due to the risk of accessing during a craniotomy. Embolization was not an option for me, but is also a very common treatment for AVM, and is sometimes completed prior to a craniotomy.
My first recommendation is to find a neurosurgeon that you are comfortable with, and a second opinion from a place like Barrows is always a good idea. My first neurosurgeon also did embolizations, but once he viewed my CT, MRI and angiogram he consulted with his partner neurosurgeon who also was the GK specialist. Together they presented the options. They felt GK presented a far less risk of deficits. I was slightly over two years until determined obliterated by a follow up angio. The fear is a second bleed during the “lag” time. I have not heard of bleed risk associated to SRS once complete obliteration is achieved, my neurosurgeon assesses my risk for further bleed as the same as any other person in the general population. The good thing is I know after all the scans I do not have any other AVMs or aneurysms.
It is very hard to know the “right” decision until after the fact. For me I was comfortable with my decision, it took 27 months after gamma for me to know it was the right one. If a second bleed had occurred in the interim surgery was going to be completed.
I would imagine some of our folks with experiences similar to what you are facing will join is and provide there perspective. Take Care, John.
I’d disagree. I’d expect to see a balance of craniotomy, catheter embolization and SRS. There seems to be a higher incidence to me of people being offered a catheter embolization in the UK as a sole option (it is more often used as an adjunct to craniotomy in the US) but that’s all I feel we see in the stories here.
Personally, I’m very happy with the considerations that my neurosurgeon team had about my treatment: in particular, I like the use of a multidisciplinary meeting to agree the best course of action. Barrow is a top practice, so I’m sure that they will take a similar approach but smaller practices in the US have (at least historically) tended to offer what the neurosurgeon is good at, possibly at the expense of what is most appropriate to the situation. I would not have any such concerns about the major practices such as Barrow but some smaller practices seem to have been less balanced in their consideration.
From reading many stories here, craniotomy appears to be best applied when the AVM is easily accessible. When the AVM or draining veins are deeper in the brain, the choice moves more towards radiotherapy of one kind or another, so as to avoid collateral damage and disability of one kind or the other. If the UK hospital gives a grading, it will give you a clue as to this. Catheter embolization can be used where the vessels are accessible by this means, i.e. are large enough to admit the catheter. Obviously, as the vessels get smaller, the treatment options tend towards radiotherapy again.
I’m convinced we have some world class neurosurgery practices in the UK and wouldn’t have any qualms about going through the process again here if I had any further need. If your current team is indicating radiotherapy, I’d say clarify why that is the only or preferred option.
It’s a tough time, so hang in there. It is undoubtedly even more difficult when the patient is your child rather than you, yourself or me. It’s hard. Feel free to ask anything you like. We are here to stand with you and try to help a little along the way.
With you as we all know the feeling of the AVM shock news. 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 but two days after that the Craniotomy did not move forward because Neurosurgeon feared he would leave him paralyzed on right side while he was already inside his brain. AVM was closer than he thought to his motor cortex. In March 2024 he received Gamma Knife . 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. I am with @DickD as far asking about embolization procedure and the reasons why its not an option for your son. 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.
I hope you are doing good, best wishes for your son.
I was 15 when my AVM bled. I was in India.I was treated with radio surgery at AIIMS hospital in India.
At age 26, I had neurological symptoms. I am living in US since age 22. Inspite if knowing my medical history, doctors in US could not diagnose, although I asked for an MRI.
I flew back to India when symptoms worsened. They re did an MRI and confirmed AVM re occurrence.
I had craniotomy at age 26. Neurosurgeon Dr VS Mehta in Gurugram, India. However,
There still was residual AVM after surgery.
I had another gamma knife at age 27.
At age 33 I was confirmed AVM free.
My point is, it is not necessary that US is the only option. You can explore India, Dubai and several other countries that have world class facility and will not break you bank.
I was treated at Paras Hospital.
I have been in US, leading a normal life. However all my AVM treatment took place in India.
The many facets of the AVM can be addressed with a diverse team, especially when a grade has been given.
Fellow left parietal survivor here and the areas of eloquence and depth of the structure are important to address here. Left parietal lesions/AVMs also involve the primary somatosensory cortex (SI).
@DickD 's great answer addresses the strategies for obliteration with compassion, which the community is here to provide.
Hang in there and I hope you are able to provide support you your child and family as well.
I leave in Malta, my case was very odd, handled in Malta and removed in Italy ( I have something like 13 operations )
We have free hospital in Europe… these ops are very expensive and you don’t want to save. I am in some FB groups most of the people are Americans and I am shocked of how it works there
My avm was snipped out of my brain in a 14-hour procedure in 1987, at The University of Western Ontario’s University Hospital.
My surgery was scheduled for 4-5 hours but, due to the fact that I had only had cat scans performed, the true volume of my malformation was able to be discerned. Dr. Peerless had to operate on me for 14 hours.
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