My 6 year old granddaughter has been diagnosed with a 2cm in the superiority aspect of the left post central gyrus.Had angiography yesterday and now waiting for appointment to decide treatment. The AVM is causing epilepsy so we are all so worried. Treatment discussed so far is Gamma Knife or cutting it out - craniotomy. Doctors have advised the AVM is in an awkward place - I believe it’s eloquent?
I’m feeling totally helpless and any advice appreciated.
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Hi @Jaxx
It’s great you found us and I hope we can share our experience with you. I’m sure we can tell you things that will help you understand what these things are and I hope feel more comfortable about the future.
First, I’d like to say it is very normal to be shocked by a finding like this. And no less so when you’re a parent or a grandparent than when you’re the patient yourself. In fact, many of us who’ve discovered that we had an AVM found out only after we’ve been rescued and have made a recovery: in those cases ALL the pressure and worry falls on parents and relatives.
An “awkward place” sounds like a decent description. My understanding of “eloquent” is that it is in a part of the brain that is important for core functions. My assumption is that if it bleeds in such an area, it would have a significant impact but also trying to operate on it is more complex: any collateral damage could impact those same key functions. So it is towards the more challenging area. However, good outcomes can still be had.
One of the things I’ve learned through hanging round here too much is that surgery can be much more successful than I think we approach these things thinking. When I got my diagnosis, the bottom dropped out of my world. I’d made it to my 50s, taking my health for granted and suddenly the lie was revealed 
Do you understand what a craniotomy or gamma knife are? We could take you through those (and some of the other scans etc that your granddaughter will go through). If it helps to understand, to rationalise, just ask. If it doesn’t help, it’s a perfectly good plan not to ask! I found myself encouraging myself about half the time I first arrived here and the other half frightening myself stupid. So take when it helps and stay away when you need but we can, I hope, help you through. I would also say I got through my embolisation operation much better than I expected. Not perfect. Not a joy. But if I needed to do it again, I know what is involved, I got on with it better than I expected and if I needed to do it again, I know I could do it easier than I made it first time!
However we can help, just let us know.
Very best wishes,
Richard
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Hi Jaxx, Welcome. Ben’s is a great resource for you and your granddaughter.
While you can get lots of good info here, some questions/uncertainty will remain. That’s inevitable-- the nature of this beast called AVM.
So try not to get frustrated when you get inadequate answers. Just keep asking. Best wishes, Greg
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Hi Greg,
Many thanks for your comments.
Still trying to find my way around the site but great to know there are people who can advise.
Take care
Jackie
Hi Richard,
Thank you so much for your response.
Any information you have re Gamma Knife and Craniotomy would be very much received.
It’s such a daunting time and as a family we are somewhat floundering albeit little Lily is taking everything in her stride. She is such a brave little mite - yes I’m bias, but she hasn’t had to have any sedation, apart from for the angiogram, but for the MRI’s and CT scan nothing. She just does as she’s told and gets on with it. Ignorance is certainly bliss but as adults we don’t get that luxury!
I believe the eloquent bit is because where the AVM is sited it’s the part of the brain dealing with arms, legs and speech so pretty important.
Anything you can tell me would be most helpful.
I really hope you are now fit and well and enjoying life to the full.
Kindest regards
Jackie
My goodness, Jaxx,
How did you find this site so soon? You are to be congratulated. There are many here who have been on or continue to follow this journey. It is frightening.
There is so much information to locate and digest. Ask questions as you are doing. This area you describe is in a delicate spot and any treatment may have significant consequences. Seek out surgeons who are known for their skill in treating children…pediatric neurosurgeons. Children are not little adults. Not to be overlooked is the trust one has in that person.
Your granddaughter is blessed to have a grandmother like you. Whatever the choice of treatment, ‘wishing you and the entire family comfort.
Hi Jackie,
So, let me tell you what I know or believe about craniotomy and gamma knife.
A craniotomy (or “microsurgical resection”) is to access the AVM by way of what I think we all think of as brain surgery, which is to (usually) carefully cut an arc of skin on the skull and remove a bone “flap” to access the brain. It’s a very often used method and very successful: the way I think of it is that we are soooo lucky to live at the time that we do that operations like this can be safely undertaken. I suspect my grandfather had a brain AVM or something similar but he was born in the 1890s and there was no way to look and no way to treat it while he was alive.
After the surgery, the bone flap is usually replaced and stapled back together but sometimes this is omitted (for example if there has been some bleeding and if time is required to let significant swelling go down. A cranioplasty (platinum plate) may be completed at a later date where this delay was necessary.
It seems often that anti-epileptic drugs are used after the disturbance of the craniotomy, sometimes for just a short time post op and sometimes longer term. My interpretation of this is that craniotomy is quite an invasive action and the brain is a very sensitive, fickle thing: how it reacts to the disruption varies widely.
Gamma knife / stereotactic radiotherapy is basically to zap the AVM from the outside, without the need to do open surgery. It is typically used where access by other methods is overly disruptive. For children, a similar radiotherapy method is perhaps more often used, called cyberknife. My understanding of cyberknife is that it delivers less damaging radiation and is important for people who have a long lifetime of potential radiation treatment in front of them, i.e. children. You could ask whether cyberknife is a better option for your granddaughter.
Gamma knife is undertaken by fixing a targeting frame to the patient’s head with a few screw points (this is cited by everyone as the worst part of the whole thing and is quite painful but local anaesthetic is used to manage this). Then the treatment is undertaken by zapping the targeted area with a low dose of radiation from a large number of different angles. By sending tiny amounts of radiation from, I don’t know, hundreds of different angles, the impact of the radiation on surrounding tissue is minimised but focussed only on the AVM.
The treatment takes tens of minutes rather than hours, I believe.
Following the gamma knife radiotherapy, the targeted blood vessels scar from the radiation and over time start to close up. Typically there seems to be no immediate effect but some symptoms of change appear at about 6 months post op. This typically includes oedema (swelling of the brain) which may need to be treated.
A gamma knife patient is usually monitored for a couple of years post op to see that the radiation has closed off the AVM. If not, further radiotherapy may be undertaken.
Both treatments are usually preceded by a catheter angiogram, which is to have a day operation to insert a fine tube (a catheter) into one of the patient’s main arteries – I’ve had three angiograms, all of which were accessed via my femoral artery at my groin. The catheter is navigated to the relevant area of the brain and a contrast material injected. The path of the contrast is observed via x-ray and the exact layout of the AVM recorded.
As for me, I’m very well, thank you. I had a catheter embolisation procedure to close off my AVM back in 2017. This is to use a catheter to inject glue or other embolising material into the AVM and block it off. It seems likely that embolisation may not be appropriate for your granddaughter if the vessels involved are too small to get the catheter close enough to blob the glue in the right place. Doing an angiogram only requires the catheter to get so close; actually blobbing the glue would need the target vessels to be big enough to admit the catheter.
Ask anything you want. This is what we are here for.
Lots of love,
Richard
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Hello Lifeisgood - what a wonderful name.
Desperation and Google have to take credit for finding you guys.
Thank you for your kind words.
There certainly are so many questions so I’m grateful to have this site.
We seem to have been lucky and our little one is under a very competent and well known (I believe anyway) paediatric neurosurgeon. She is also being seen by paediatric neuroscience as well because of the epilepsy.
At the moment all we can do is keep our fingers crossed, try and not let the stress get in the way of living and most importantly keep our little soldier-ess happy and smiling.
Kindest regards
Jaxx
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What a great summary of the AVM/neurosurgery options. Thanks Richard
Hello again Richard,
Well that was very informative - thank you.
I know the glue option isn’t in the frame as already advised it’s not used much now. Not sure if that’s just in children of course.
It all sounds very scary and the thought of my little cherub having to endure any treatment is horrific! However, we are under no illusion that something must be done as the alternative will be like living with a ticking time bomb!
She’s had the angiogram, up through her groin and they now have a detailed map of everything necessary to make a decision. We are now waiting on the MDT’s outcome which hopefully won’t be too long and once we have that decision I’m sure I’ll have many more questions if that’s ok?
She is already taking anti epilepsy medicine as the AVM has caused mild epilepsy already!
Anyway, I’m pleased you are well and you are so right that we live in this day and age. I lost a cousin some years back who was just 21 with a brain haemorrhage. I’m now wondering if she had an AVM not detected so enormously grateful Lily’s has been.
Please let me know if I become a pain but I am so grateful for your time and for finding this wonderful site.
Continue to enjoy life and no doubt ‘speak’ again soon.
Jackie x
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Jackie,
If there’s one of us who talks so much as to be a pain, I know which one it is! 
The extra thought you’ve provoked is that AVMs are not in themselves thought to be hereditary. However, there are other conditions that bring AVMs with them that are hereditary. So what that means is, in essence, is that effectively sometimes there is a hereditary connection (but it is much rarer for it to be the case).
Since you suspect another AVM in the family, it may be worth asking the question about heredity. The most common of the hereditary conditions we see here is HHT – hereditary haemorrhagic telangiectasia – and some of its principal signs are regular nosebleeds, red spots on the skin (especially the lips) and multiple AVMs throughout the body. Like I say, it is very rare but we do have a decent contingent of people here saddled with that diagnosis.
Hope this may be useful to cross off.
Very best wishes,
Richard
Hi Richard,
Just thought I’d pop on and give a quick update.
Had a video call with Neurosurgeon last week. Very impressed with his attitude and only heard good things about him so gives a little confidence.
The MDT meeting is this coming Tuesday where the decision of Gamma Knife or Surgery will be made. He will contact us after meeting to discuss their recommendation but he has said we can have an input as to what we feel happier with!
Now Richard, this is where I could do with some advice.
Neurosurgeon says she is eligible for either procedure. I have read up on the Gamma Knife which I understand isn’t intrusive as such but I’m not too sure of the risks. Any info you may have would be very gratefully received. Also, any info re brain surgery also gratefully received.
I just want to have a little knowledge of both procedures prior to the meeting so we don’t get bombarded with all the information on the day. Forewarned is forearmed so they say!
Trusting you are well.
Really appreciate your time.
Kindest regards
Jackie
Jackie,
So the thing to do, obviously, is to ask the neurosurgeon what the risks are associated with each procedure (because while we might understand the general risks, some will be to do with your granddaughter’s specific situation).
Plus, I’m not a doctor. I’m just going to try to remember what I’ve seen written here before. As you say, it is useful to have the vocabulary before you go into these things.
Gamma knife. As far as I understand it, the risks associated with gamma knife are:
- You’re administering a dose of radiation. This reduces the amount of safe radiation a person can have over their ensuing lifespan. Note angiograms will also add to this tally. Why not cyber knife is a decent question (I think it is less available may be one answer).
- The risk of a bleed remains while the radiotherapy takes a couple of years to act.
- There’s a risk of zapping too much brain, causing necrosis (dying off) of more than necessary.
- There’s a risk of oedema (swelling) occurring, impacting intracranial pressure and needing to be dealt with. Sometimes steroids are used. Sometimes a shunt is required (I think this is less common).
There are risks associated with the angiogram used to map out the situation in detail but this is common to any approach. The main risks associated with an angiogram I think are haemorrhagic stroke (and possibly death) due to the catheter guide wire breaching an artery.
Regards a craniotomy, I’m less sure but
- Risk of bleeding (haemorrhagic stroke)
- Risk of damage to brain in order to access the surgical area (v similar to necrosis in impact but you want to know if less brain likely to be damaged one route versus the other)
- Risk of epilepsy post op through irritation of the brain. (I think this is common to both approaches but craniotomy seems more invasive on the face of it).
- I’m pretty sure there’s a risk of oedema as well but it seems to me more common with gamma knife.
Craniotomy looks to fix the problem now. No waiting two years. A lot of people look upon craniotomy (a.k.a. microsurgical resection) as cutting out or clipping off of the AVM as more final, more definite but I’d ask about the doctor’s view on this sort of thing.
Have I made it as good burnt as scalded yet? I think the reality is that it will wholly depend on your granddaughter’s situation.
And the other factors are:
- Which is the doctor most comfortable with?
- Which is the patient most comfortable with?
Happy to expand on anything, to the extent I reasonably can.
Richard
Brilliant Richard - thank you.
Same sort of things went through my mind with the information I’ve gathered but really great to have it confirmed. Would hate to make myself look any more stupid than I already am 
.
Unfortunately the AVM is already causing epilepsy which we are hoping could be cured once the damn thing has gone - however that it.
Once again thank you so much for your input, really helps me clarify things.
Take care
Jackie 
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Hi All,
Thought I would give an update on what’s been happening.
My 6 year old granddaughter had her craniotomy to remove the grade 3 AVM in her brain 12 days ago. She also had a
Nidal Varix.
Because of the location the surgeon was worried that she could end up paralysed down her right side so you can imagine our worry.
Well, after a 12 hour operation and a 10 day stay in hospital, she is walking and using her right hand nearly perfectly and she is home!
Still always to go but I couldn’t be more grateful to the staff at Bristol Childrens Hospital or of my amazing, determined granddaughter!
Thought I would share this brilliant news.
Wishing you all good luck
Jaxx x
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This is exactly what we want to hear! That’s fantastic news! I hope she continues to do really nicely.
I’m always amazed at how resilient small people are. One of my friends has a granddaughter who has gone through 15 brain surgeries before her 5th birthday, to do with a tumor rather than a vascular anomaly. I don’t know how anyone gets through that sort of thing, either parents or patient!
The risks of these things always plague us but it is great to know there are really good outcomes out there to be had and that these things can often stay just as a risk rather than a reality.
Well done to all!
Richard
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That’s wonderful! Best wishes and a speedy recovery.
Thank you. We have been remarkably lucky!
X
I’m so happy for Lily!
Is her epilepsy cured as well?
I got to know about my AVM when I was 19 and it was too big and deep down to do craniatomy/gamma so I did proton radiation therapy. I no longer have to take the epilepsy medication (LUCKILY). I don’t know which kind of epilepsi medication Lily takes but the one i had made me so incredibly irritaded (like a bad PMS), lost my hunger and also never felt really happy or sad. I was just numb. I got depressed and almost suicidal. But also, I ate it during a looong period.
I stopped eating it (decreased it bit by bit), when I went into alternative medicine (acupuncture and acupressure) and tried CBD oil also. I’ve never felt better today and 6 years after the radiation therapy I’m finally declared healed!
The doctors never instructed me to try to decrease the epilepsy medication. They actually told me I had to eat it for life - even if I don’t get any seizures anymore! That’s why I felt the urge to write to you, incase you notice that Lily feels bad due to the medication.
Take care and best wishes to you both! 
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Any changes in medication should always be discussed with your doctor. In terms of the medications for epilepsy, yes there are some medications that are known for causing mood disturbances. Again this should always be a discussion with your doctor. I know that my daughter was put on one medication instead of the typical one they would start her with because of the concern over mood disruption.
Over time decreasing meds might be an option, but again, should be done with the doctor. Uncontrolled seizures can cause bigger problems so lowering meds needs to be done carefully.
Sharon from ModSuppport
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