Avm recurrence rate in children

Support Parents and Care Givers of AVM Patients
#1

First of all I would like to mention that my 6 years old kid who is turning 7 next Thursday had his craniotomy on last june and he is considered to be an avm free since then but to double-check we need to do an angiogram on next june ( a year from the surgery ) to confirm that there is no recurrence.

The recurrence subject did never came up from his doctor at all ( I searched google for it ) and when i talked to him about it he told me i should not worry about it unless he told me about it because he claims that in the past 20 years in his career he has never faced any recurrence and he said that the chances are extremely low specially in our situation but he will ask for an angiogram after 1 year ( the one i mentioned above ) of the surgery to make me less worried but if it comes to him we did a ct angio after the surgery and an mri/mra angeio after 6 months of the surgery and thats enough for him…

So the thing is has anyone faced a recurrence here either an adult or a child and is it common ( i know its more common in children than in adults ) but how common in a percentage ?

Please since i check the damn google im always depressed and keep thinking about if so … Am in bad health shape because of the overthinking please help me …

And also one more thing that I observed here is that most of the @ParentsAndCarers who had the avm free for their children ( big thumbs up for them )stop posting anything since … wish i could to talk to them to know hows their recovery is going.

#2

Any similar story that could help please … I’m going insane here ;( specially that the doctor didn’t ask for an angiogram after the craniotomy and only for mri/mra and ct angio. And back then i didn’t know anything about the Recurrence/Regrowth thing!

#3

@Omairi

The main thing I would do is suggest you stay away from Dr Google. She is a very strange doctor who suggests the rarest, most complex and horrific ailments with the same or greater enthusiasm as anything more common and easy to cure. I completely understand that as a parent you put yourself through hell because of your child but anything you can do to not put yourself through it, I encourage you to do. You’ll do more good enjoying the age that your son is than to spend too long worrying about what might never be.

I’ve done a bit of a search through the posts that we have on this forum and many of them are very old, so it is less likely that writing back on these would get you a response but the following thread sets out what I believe to be the case. Have a read of it.

What you will see is that intracranial AVMs recur the least frequently and I agree that surgery tends to be the least likely to recur. So your son has the very best chance of being fully well after his surgery.

If I remember rightly, your son had his operation 2 or three months ago. This is still very early after a major trauma to his head. He needs time to get better. We should also think that undergoing lots of scans using radiation isn’t good for us, either, so it is best to wait for his operation to fully heal and not want to have a scan every month or so. I know exactly how you feel: I think I wanted lots of scans at one point but really, they’re not good for you, so should be kept for when they are necessary.

You can search for things like “recur” using the magnifying glass, above, to find all of the stories that might be relevant. I would caution that we moved web sites or “web platform” in summer of 2016, so older posts you are less likely to find people still active in the site.

Very best wishes,

Richard

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#4

Thank you brother you have been much of a help ;)… And you are right in every point you mentioned except that my child did the surgery 8 months ago and what worries me that the first 6 months were symptom free thank god but at the start of the 7th month he strated having some headaches mild ones that we dont need any medicine for it and it would last 2 or 3 hours or way less and it would happen once a week and when I called his doctor and told him that he said its normal and no need to worry and it has nothing to do with the surgery or the avm recurrence.
And today i went to see another doctor to explain what we been through and showed him all his mra/mri and ct angios … he said the same thing and when i told him that im planning to do an angiogram after 1 year of my boys surgery he did not agree and told me that the mra will do just fine and the risk of the angiogram is way more than the purpose of it because you already took away the avm… So im now lost because his main doctor also didn’t want to do an angiogram but he is welling to do it because of me and now the other doctor is on board with him so the question is should I do the angiogram for my boy after 1 year of his surgery or should i stick with doing mri/mra ? Because he haven’t did any angiograms after the surgery only once before. And i see everyones here talks that the angiogram is a must!.

#5

Omairi,

I’m sure you’re never going to get the perfect answer! My opinion on MRIs and angiograms is that an MRI is not dangerous: it doesn’t emit radiation that is harmful (so far as I know) and I would say it is a more general scan: it will look at slices through the brain. An angiogram carries some surgical risk: it requires a puncture to insert the catheter (usually in the femoral artery) and can lead to issues at the puncture site, I think the catheter can cause an ischaemic stroke or a haemorrhagic stroke and the imagery is obtained through X ray or similar radiation; however it is (I think) a more targeted scan and to my eyes a lot lot clearer to see what is going on.

So I’m sure it will be your choice.

When I was concerned about whether I was fully fixed in late 2017, early 2018, I had both an angiogram and an MRI though I didn’t particularly want the angiogram: I felt the MRI would look more widely. But that choice was not especially educated: I’m not sure which scan would do the best for me.

My doctors were willing to do whichever scan I wanted and/or whichever they believed would show that everything was fine. I didn’t have a good meeting with my neurosurgeon and consequently I had both types of scan, mostly through poor communication. But neither seems to have shown anything.

I’m not sure if I’ve said this to you already but my interventional radiologist only promised me that he would fix my risk of stroke when doing my embolisation. His view was that aiming to fix headaches is a lost cause, as the brain is far too susceptible to all sorts of things to be able to find the cause of headaches. He also told me that sometimes whatever is driving a problem can be so tiny that he cannot even see it, never mind do surgery to fix it. It doesn’t necessarily stop tiny things from causing headaches but it does mean there is no reasonable fix if they are so tiny.

As always, I hope some of these thoughts might help.

Best wishes,

Richard

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#6

Thank you Richard you do help me alot :smiley:

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#7

My daughter had an AVM rupture in her cerebellum when she was 19. She had surgery and embolization and the AVM was obliterated. The neurosurgeon had said in young people there is a chance that the AVM will regrow. So, he scheduled her for an angiogram 5 years after the last procedure. Her avm DID return. So, I suggest you do have your child rechecked. It is rare but I know another person that it happened to her child as well. It does happen. Best wishes.

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#8

Thanks for the reply but could you tell me if your daughter has any symptoms for the Recurrence or just got discovered after a scan ?

#9

The Avm was discovered with an angiogram. Her AVM is in her cerebellum. She received cyber knife and now its the waiting period of 3ish years to see if that will obliterate the AVM again.

Best wishes to you.

Sara

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#10

I mean she didnt had any symptoms ? Headaches ??

#11

My daughter did not have any symptoms to indicate her AVM had returned.

Sara

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#12

Ahh … Because what made me worried is that my boy didn’t had any symptoms after the surgery but after 6 months he started to have a once a week headache and mostly on the top of the head (( not at the place of the surgery )) and this headache started the whole thing in my mind.

#13

Hi, my daughter is 13. She survived an AVM bleed in 2006 at age 5 months. It was dissected out and supposedly no chance of coming back.

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#14

Glad to her that … Thanks for comforting me

#15

I’ve generally been advised that AVM reoccurrence is higher in young children than adults, but I’m currently undertaking an Angiogram today after 9 years since removal as a recent MRI mentioned there may be a reoccurrence… I think that for peace of mind get it checked again and if your concerned as a parent please do what you feel is best for you guys… sending prayers your way and hope everything works out and he is AVM free FOREVER… God bless!

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#16

Yeah me 2 thats why I’m over worried … Anyway do tell us hows your angio goes :wink:

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#17

I think over time our body changes & the possibility is the headaches he’s getting may just be the way his scalp is growing back as it does take time after major surgery… I found in certain weather it hurt and some days was ok… he is still young & growing so I can only imagine that it is all contributing to these feelings… if he gets worse or you see neurological issues then definitely see someone as a parent I feel your concerns… God bless!

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#18

Yeah i hope so because his doctor told us its no related to the op by any mean and its normal but you know a parent will always be a parent I just want to do the angio asap but the doctor and my wife want to wait for one year after the surgery so i guess we will wait :slight_smile:

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#19

My daughter has a craniotomy at 4 months old fornher avm. At age 5.5 at a routine mri they discovered proliferative angiopathy. The drs ate choosing not to treat, because the risks outweigh the benefits. She’s monitored with annual MRIs.

#20

Hi, I had an AVM rupture in my cerebellum in 2017, when I was sixteen. I had my AVM removed in early 2018 and had an angiogram after my surgery, which showed that the AVM was gone.
I was told by my neurosurgeon that AVMs can come back in people under 25, and the closer you are to that age the less likely an AVM would come back.
I had a follow up angiogram a year after myt surgery because of this, unfortunately it showed that my AVM had returned. However, it is unclear if it actually regrew or there was just residual AVM from the first surgery that did not show up on the angiogram right after surgery.
I’ve been told that its rare for AVMs to grow back but, I would suggest getting a follow up angiogram just to be safe.
Hope this helps,
Ella