My 9 year-old son's AVM in the cerebellum is inoperable!

Types of Avm's Cerebellum & Brainstem
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Hi I was wondering if anyone here has a similar condition and I would like to know how you are coping with it.

My 9 year-old boy had a rupture in August, 2024 and it has been more than two months. I have been doing research and consulting doctors and see if there is a better way to fight his AVM in the cerebellum.

So far, we have been told by doctors that his AVM is inoperable because it’s near the brain stem and it is diffuse AVM in the cerebellum. Any treatments would be too risky to him so it’s better to be conservative about the treatments. He is very young and still growing so the doctors think it might damage his brain growth and cause irreversible damage so the best thing we do is to wait until he reaches puberty. But of course even when he is a teenager, the risk is still the same and even higher.

Now he has a VP shunt in his brain so if there is any rupture in the future, the device would help reduce the pressure in the brain and save his life. And of course we will need to send him to ER immediately. So far we haven’t noticed anything too threatening. I don’t know if anyone has a VP shunt and if so, how long has he/she had it.

My son is coping with it okay except he likes to wear a cap to cover his scar on the head and also hiding his VP shunt caz it’s visible. He thinks it’s ugly so he is waiting for his hair to grow longer. We told him he is very handsome with or without the VP shunt.

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Hello! I’m sorry for your son’s struggles,I m a mom also and I can only imagine what you are going through.
I had a bleed in the cerebellum from an AVM September 2023.The recovery was difficult but accepting it was even more.I had radiation treatment in December because of the location.
I ve read many times that even if you operate a child the chances of it regrowing are high…I don’t know what to advise you but if the doctors say it’s dangerous I suppose in your place I would wait and you never know with the years and advanced technology what they will be able to do…
As for your child’s emotions he is a little confused and depressed from the bleed if I take it from my experience,he just needs time and I’m positive he will be himself soon!

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Hi, I am sorry to hear that you had a rupture last year. It must have been difficult for you. Hope all is well for you now.

My son was lucky because he wasn’t affected too much this first rupture. But you were right about his emotions. When he woke up in the PICU and he was so disoriented. He didn’t know what happened to him. When he was in hospital bed in the standard ward, he was sad, depressed and really wanted to go home.

After he was home, he felt himself again. We were glad he recovered in a way that we dare not to dream of. Thank you for reminding me of taking care of his emotions. Sometimes he behaved so badly (like a 9 year old boy will do) we lost our patience and shouted at him.

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Hey Angela

My name is Merl, Im a member of the modsupport team here on Ben’s Friends.
I have a shunt, a VP shunt. You ask how long do they last and that’s one of those questions to which there is no exact answer to. A growing 9 year-old boy, it’s likely that he’ll out grow his initial tubing over time, but the medicos will keep an eye on that. But there can be other issues with shunts such as blockages and breakages. Some people are fortunate enough to go their whole lives issue free, but some of us aren’t so lucky and may require multiple revisions.

I was 24 when I got my first shunt it lasted 6mths. My second lasted all of 2months I had issues with the valve blocking, it was replaced and then I had 14years of manageable. I could function OK, but I had to manage my work vs rest much more carefully. A piece of tube broke and just the tubing was replaced. In replacing the tube, an air bubble blocked the flow and it was decided to replace the whole device. The old/nonfunctioning brain catheter from the old shunt is still floating in situ as well as the present working device.

Now, I have to say here my ‘shunt story’, with multiple revisions, is NOT normal, but it can happen and yet some people can be issue free for life. And the medicos cannot give a definitive reason of “why?”. But in saying that, from a non-doctor/patient view, I can understand them not wanting to operate on a young prepubescent male, preferring to wait until he’s a little older if they can. Small external alterations/surgeries now can have some MASSIVE post puberty implications. It can often be deemed better to wait, if possible. Sometimes it can be deemed too risky to wait and that’s an assessment only the medicos can make.

P.S. I wear a baseball cap to cover all of my humps/bumps/hollows and scarring too :rofl: I’ve gotten some weird ‘OMG’ type looks when people see my skull minus the cap, now I always wear it.

Merl from the Modsupport Team

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Dear Merl, Thank you so much for sharing your VP shunt stories. It really helped reduce my anxiety as a parent. I know the VP shunt is safe to some extent but not without risks like what you just mentioned in your own case. The doctors here said the same thing before we agreed to let our boy have the device. We chose the latest VP shunt which is adjustable and the tube is safer.

I am sorry to hear that you had some trouble with your first second VP shunts but then you have been living with it peacefully. It’s a relief to hear that. I know that my son will need to replace his VP shunt when he is growing up but that will be years I assume. So far, I am hoping to learn from everyone else’s experiences and know what to expect when the worst scenerio does occur.

Knowing more from the professionals and also from someone who has actually been through all these makes me feel calmer than searching in the dark. The fact that we know too little about our son’s AVM development and what might happen to him without any proper treatments scares us to death.

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@AngelaCheng

Welcome to AVM survivors! It’s really good that you found us and I hope we can all help you a little along the way.

The information I want to share with you is what I believe about diffuse AVMs – I don’t have one myself and most of the people here don’t have a diffuse AVM but I’ve read a few things on this forum over the past several years and I thought it may be helpful if I can share with you what I believe from what I’ve read. You can use the search :mag: to find some of this information in the site.

Most of the people on this site have an AVM that has a distinct “nidus” (a Latin term for a bird’s nest) in their AVM and it is this which surgery or embolization or radiotherapy is focussed upon when doing treatment. Since your doctors are describing your son’s AVM as “diffuse” I believe this means that it is spread across multiple places (in my mind a bit like lacework). As a consequence of this large spread, it is less treatable because of the danger of doing damage to adjacent tissue. In the case of a brain AVM, damage to brain tissue is debilitating and definitely undesirable. That it is in or near or around his brainstem makes it especially difficult to operate on without doing damage to important adjacent functions. So this is why the doctor has recommended leaving it as it is.

You are definitely not alone. It seems a little more common for people with AVMs near the brainstem or in the cerebellum to have treatment than it used to be but it is still much rarer than for AVMs in other locations. So you’ll find most of the brainstem and cerebellum patients here to be following the same route as your son. I hope that knowing you’re not at all alone helps a little.

Very best wishes,

Richard

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Hi Richard,
You know when I first visited the website, I thought I finally found a place where I can dig into what’s going on in the world of people who are going through or have been through similar experiences. This AVM thing shocked my world and like most people I didn’t know what to expect because there were so many uncertainties and struggling moments when we had to make a decision to deal with our son’s AVM. I really appreciate you and your team’s efforts.

In the beginning, we thought the doctors were not really doing anything actively to cure my son’s AVM. Then by knowing more facts about AVM and my son’s AVM, I know every case is different. In my son’s case, the doctor said it was rare and it’s not treatable at the present. So we asked the doctors if there are any similar cases like my son’s condition. Different doctors responded differently but the conclusion is every case is unique so they couldn’t tell us what’s going to happen to him. All they instruct us to do is to monitor and observe it as my son grows.

As a new user, I am still exploring all the different sections and trying to find what might guide me to assist my child with his AVM. I realize it’s a long battle for my son to fight but knowing he is not alone and telling him stories about what other people are dealing with thier own AVMs did help my son. I told my son about Merl’s VP shunts stories and his cap (covering his head), he gave me a big smile caz he knew he is doing the same thing like Merl so he is not alone. At school, he is the only one having a device in his head and he imagines other naughty boys will laugh at him because of it so he likes to put on a cap in class and everywhere he goes. I think his classmates and teachers know about his condition and are okay with it.

I do want to say thank you to you for letting us know that we are not alone.

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It is my pleasure to just walk with people a little along the way through these things. I find it amazing how we can help someone through the power of a few words.

Yes, other kids will always find something to poke fun at. If we could fix that, I think even the adult world would be a better place!

Among those who are in a similar situation to your son is @Lulu1 who is also one of our moderators. I’m pretty sure Lulu used to have a shunt as a younger person and was advised that an operation would not be suitable for her. The great news is that she’s no longer the young person she was! Life has gone on and all its adventures are in full swing. So we should not be overly down when treatment isn’t recommended.

Telling stories is an important thing, so it sounds fantastic to me that you’ve been able to tell Merl’s story in a helpful way! Well done!

Very best wishes,

Richard

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Very many thanks Richard and Hi AngelaCheng.

So very sorry to hear about your son and what he is going through. Nobody deserves this, least of all one so young.

My AVM/Shunt journey started when I was 12, going through puberty. I began having debilitating headaches and vomiting. Over time these episodes lasted for longer and the pain got worse. I missed a load of school. My doctors kept diagnosing juvenile migraine and prescribing different tablets. At 14 I finally got a CT scan and was admitted to hospital as an emergency case. Turned out the headaches etc were being caused by a build-up of CSF. Next day I got my first Shunt and at that time there was no choice, no valves etc. It lasted 3 years and then blocked. Same thing when I was 24. Both times the shunt was fully replaced.

At 27 I had my first MRI and they discovered an AVM in my Cerebellum. It had directly caused my other problems by blocking normal CSF drainage routes. I was totally shocked especially when told it was untreatable. Like your son’s AVM, it is so near the brain stem and essential structures, and so large/diverse that even the centre of excellence here won’t touch it. I was once asked if I wanted to pursue Gamma Knife with multiple embolisations first. But it wasn’t recommended, I would almost certainly be left with deficits and they weren’t confident of getting it anyway. I got the old ‘go away, live your life and forget about it’. It took me a while to accept as I think there is a natural human tendency to want to treat. But I have made my peace with it, even if its scary as hell sometimes. I’m very positive in my outlook though and feel that keeps me healthy.

I’m in my early 50s now and my current shunt dates from 2007. I don’t ‘not do’ anything , although I do have a natural tendency to steer clear of ‘risky’ pursuits. You got some great advice from previous respondents and I wish you and your son all the very best.

Lulu x

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Dear Lulu,
I couldn’t believe you had a VP shunt that young. That was years back when the technology wasn’t as advanced as today. You must have been through so much. I bet at that time no doctors were famililar with AVM in the cerebellum not to mention knowing how to treat it properly. I can only say you must have been a very blessed person.

I think your AVM is just like my son’s and it’s so large that any treatments are considered to be too risky. You must have had a rupture back when you were having headaches but they thought you were just having migranes. My son did vomit a lot that morning when he had his first rupture. After having all the necessary tests (CT, MRI, etc), the doctors decided to treat his CSF by placing an EVD that same night. After he was stable, the doctors replaced the EVD with a VP shunt in hope of dealing with any unexpected rupture in the future.

After his first rupture, we didn’t know what to prepare for the second rupture except not letting him do strenous work or exercise too much. The doctors just told us that he might need to skip PE class. I talked with the teachers at school and they agreed to let him skip the PE class or attend school Sports Day. So far the teachers at school have been very supportive. It’s just I am not sure how long this is going to last. He looks normal, but as days go by people couldn’t believe he is sick so I will have to explain to any new teachers.

It has been only two months so I basically walk him to school every morning and take him home myself. Today I was asked by the security guard at the gate “Why do you acommpany him to the classroom every day?” I said “I did that because of his condition”. I know he is having a balance problem (but not to serious) so I walk him to school and see if he will be okay without any assistance. Now I am thinking maybe I will let him walk by himself in the future. I just need to think about it.

There are so many things I have to learn due to his AVM since it’s not treatable. I know I want him to have a normal life but at the same time I know it’s not going to be the same.

I am so grateful for you because you basically give me a lot of hope. Having known you are fighting that for almost 40 years, I changed my perspective about the terrible disease. I don’t know how you cope with your life all these decades and I don’t know what other challenges you have faced in the past and now. I just know if you could be that brave, I can guide my son through that gradually.

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Thanks so much AngelaCheng for your very kind words. I was so touched to read them.

Yes I know I am truly blessed and try to be thankful for that every day. I feel almost guilty when I read some of the stories on here. And then I remember we’re all on our own journey. It is what it is and we have a duty to ourselves to make the most of life. Knowing I may have helped you, even in a small way, fills my heart.

You are right and my first shunt op was in 1987. Since we didn’t even have the internet then I remember wondering if I was the only one (now I know I’m really not). My friends, family, teachers etc didn’t understand at all and you’re right, it does get somewhat tiring to have to keep explaining it. I used to try not to talk about it and pretend I was just like everyone else. But then I realised I wasn’t doing myself any favours or doing anything to raise awareness etc. So I stopped and then I ‘outed’ it. It made me feel a thousand times better.

I can’t believe how much things in the medical world have moved on over the years and truly believe that’s enough to keep us all hopeful of a happy ending to all of this.

Best wishes
Lulu

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Hey Angela,

And despite all of the high qualifications these Dr’s have and all of the nice speeches they may give, with all of the reports they make, none of them can give you that exact answer. None of them. The plan is: operate, fix, recuperate and life returns to normal. And that’s the ultimate plan for everybody, but the reality… …ahh, now that’s what they can’t predict.

I’ve required a few neurosurgeries. The first was going to fix the issue, but it didn’t and each operation has left me a little ‘gift’, the type no one wants to receive. The symptoms/side effects from each haven’t just added up, they’ve multiplied each other. The medicos can give you a “best case scenario” and a “worst case scenario”, what they can’t give is the ‘exact’ bit in between. One Dr I saw for my eyes put it to me rather bluntly one time when I was seeking answers: " The brain controls everything. You’ve had multiple brain surgeries. What did you expect?.." Well, I didn’t expect THIS.

Over the years I have learnt how to manage around ‘Me’. It used to be I had 2 speeds: Full throttle and stopped. Now, even half paced can be too much. I can push my limits, but there’s always a price to pay for doing that, usually in agony with a man with a sledgehammer trying to bash his way out of my skull. I had to learn to read my own signs, listen to my body and when it said “STOP”. I had to stop. I pushed my limits one day, convinced myself I was building stamina by pushing myself, only I pushed it too far. Something went “POP” and I found myself back on the neurosurgeon’s table. As I often say to others “Ahhh, don’t do that” and listen to your body. It will tell you.

Now, I also want to say that there is no right/wrong way to manage. Some people can come out the other side wondering what all of the fuss was about, with no symptoms to worry about. So, for them, management is no problem. Some can have short term ‘recovery issues’, a few months later and things start to settle. But then for some those issues can be long term and for some life changing. Because of ALL of these variables, how one person manages it all, to how another deals with it can be VERY individual. Some medicos make out they have ALL of the answers. They don’t. I have to manage for me, not manage for the drs.

Finally, I think it is natural for any parent to be protective of their child and when a child becomes unwell that protection mode goes into overdrive. It’s natural. But kids will be kids and over time you too will learn to adjust. You can’t wrap them up in cotton wool and keep them safe all of the time, you’ll be doing yourself a disservice if you even tried. So, it’s an adjustment for everybody, including you.
We are always here if you need to chat.

Merl from the Modsupport Team

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Dear Lulu,
When I posted the info here in the forum, I had no ideas what I would get but then Betty, Merl, Richard, and you responded in such a short time. That actually surprised and moved me. You were all willing to take a lot of time to share your stories and experiences with someone you didn’t even know.

All your respones have been so supportive and realistic to me. I was eager to read and digest what you said about your AVM and how you handled that disease. Every time I read your messages, I couldn’t wait to share them with my son and my husband. That actually cheered us up a little bit even though we felt so sorry for what happened to you.

Talking with doctors and talking to you who have gone through AVM is a totally different experience. At the hospital, my son is just another case which the doctors have treated along the way. Some doctors were quite warm, kind but others were direct, frank and to some point a bit ruthless about telling us that there is nothing else they or we can do about it right now. Well, that’s their job to not to gurantee anything when they see cases like my son’s. The truth is we need professional advice but we also need real people, real stories, real AVM survivors and their families to tell us it’s hard, it’s like hell but it’s also hopeful in a way when life goes on.

You have no idea how useful your words meant to us. It’s just like we were at rough sea trying to grab a floating wood so we can breathe in an uncontrollable world. You actually made a big difference. Thank you.

You know what my son said about your case? I told him you had your AVM in the cerebellum for thirty something year. And he said his AVM would never rupture in a hundred year. He is super positive. LOL…

Ps. I might have a lot of questions to ask you in the future if you don’t mind. Thank you so much.

Angela

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Dear Merl,
It’s a lot to take and it’s also hard to process what you mentioned about your AVM journery. What you said is too real and too scary to me because you actually pointed out my worries and concerns about the future path my son will probably take. I will have to revisit it and ponder whenever we need to make a decision or when we are down.

Reading what you said, I hate to agree with you but can’t think of a better way not to when you talked about the ultimate plan: operate, fix, recuperate and life returns to normal. It sounds like a perfect plan for everyone but the reality is not that simple and the results are not gurannteed at all. No one can … Well, if that route doesn’t work, i will take another.

Your two speeds kind of shocked me because that’s what I am also struggling right now: whether to push my son or not. How do I know he is just being lazy or he is trying his best. He is a young kid; he is learning a lot about himself and he is trying things like what you have done. He sometimes has emotions issues but I don’t know if it’s due to his condition or he is just testing me. He is also pushing his limits. How much is too much? When is the right time to stop?

Talking about protecting my kid, well, it’s hard not to. Frankly speaking, even if I really want to, it’s really just so much I can to do to help him. Mostly, he is dealing with it himself, physically and emotionally like what you did. Yes, I will learn to adjust and I was adjusting myself from day 1… Gee. It’s hard… now I am a bit better I guess. Nothing stays the same and so does the disease. It’s a gift and a curse at the same time but it’s life. As life goes on, we have tears and joys along the journey…

Thank you so much for sharing your expereinces and reminding me of not being overprotective. I will keep that in mind.

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I do not envy your position as a parent at all. Do you or Don’t you? and again there is no right/wrong answer. It’s a assessment you make at THAT time under THAT circumstance.
As for his emotions, that’s something we learn to (somewhat) regulate as we mature. In my former life I used to teach people with disabilities and working with people with challenging behaviours was a regular/daily event.

I do not know you or your son and it would depend on his maturity and his understanding of self, but a strategy I have utilised with clients before is ‘self-identifying’. What is the problem? Why is it a problem? Is that problem THAT big and why? But to have them answer the questions for themselves. You can direct them in the right direction, but have them come to the final conclusion. If they can identify it themselves, often the acceptance can be a little easier. Also with them finding the answer it can give them confidence in problem solving.

He’s a kid and kids push boundaries, (especially with parents) it’s what they do. Me? I didn’t just push boundaries, Ohh no, I smashed them, I took them to the extreme, got myself into LOTS and LOTS of trouble. That was back when the policeman would clip you around the ear and take you home to Mom and Dad, which was worse than any police punishment :rofl:

“How much is too much? When is the right time to stop?” Nobody can answer that because every situation and every person is individual and that goes for both a parent/s and a child. Trying to gauge it on some sort of scale isn’t possible as we all have our own measure, our own scale.

Merl from the Modsupport Team

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For the record, I don’t believe that it is feasible to operate on a diffuse brain AVM. I may be wrong, that might also change with time, but the simple fact that it is spread over an area means that you’d do damage to large areas of good brain to achieve a reduction in risk of a bleed. Honestly, if the doctor is saying that it isn’t possible to do an operation, it isn’t possible. Most people here, most of the stories here, you’ll find people with much more focal AVMs than your son has. Please don’t be led by optimism in reading stories that aren’t the same as for your son and think that you should push for an operation.

Rather, I think you’ll need to be like Lulu and just keep an eye on it. If the capabilities of doctors changes in future or different technology allows more carefully targeted treatment, then that may change but at this time, I feel your son is in a very different position than most brain AVM patients in this forum.

And just to set context a bit further, Merl is a brain surgery survivor but doesn’t have an AVM. His experience of brain surgery is exactly the same as some of us in this forum but he happens not to be an AVM patient.

I think most of us find this site to be encouraging and frightening in roughly equal measure. It is important that we are able to share with you the good experience and the much more difficult or frightening experience: this is the reality. I know that when I first joined, I was helped and horrified in about equal measure.

Hopefully, in doing so we can help you, even though you are in a different country and our only tools are bare words.

Very best wishes,

Richard

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Hi Richard,
Thank you for letting me know that Merl’s condition is different. I thought he has a VP shunt because of his AVM. I got that part wrong.

I understand that Lulu’s AVM is like my son’s and yes, we are not trying any risky treatments right now. Like what the doctors suggest here, we will carefully monitor our son’s AVM and see how it develops.

This website is really useful without a doubt even though there might be lots of things for me to digest, the worst or the best. No one is try to hide the ugly truth but hope is still there.

Angela

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Hi Merl,

Being a parent of a young kid with an AVM is not a position I want to put myself in. Gee, that’s just like adding fuel to the fire if he happens to be a naughty boy. When you said “He’s a kid and kids push boundaries, (especially with parents) it’s what they do.” You are telling me. :rofl:

Well, I am learning to be a good parent but it’s NOT EASY!! But I do appreciate your advice. Thanks anyway.

Angela

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Hey Angela,

Ohh, I can assure you none of us are on this neurological journey by our own choice. Nobody in their right mind would choose to be here, but none the less here we are. Now, we have to learn to manage it all. It’s all a learning for everybody involved and if anybody EVER tells you the know it all or know all about it, it’s a lie. I am yet to hear of two neuro journeys being exactly the same. I have been dealing with medicos and specialists for many years and they all seem to have a differing opinion. Often it’s not that one is right and the other wrong, but rather differing views, differing approaches on the same issue. But none of them could possibly Know-it-all.

You didn’t get that part wrong at all. I never told you why I have the shunt, just that I have one. So, that’s on me, not you. I have a low grade tumour in the centre of my brain called an astrocytoma. The growth is pressing on the wall of the aqueduct, the drain, blocking the flow of CSF, hence the shunt to drain the fluid off. It’s also putting pressure on other parts of the brain which can send my system some weird and wonderful (NOT) signals. The neurosurgeon’s have operated a few times and reduced the mass but are reluctant to remove it as it’s growing too close to bits that I need. The shunt is there to manage the fluid.

Hope it helps
Merl from the Modsupport Team

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I only mentioned that you’re not an AVM patient, Merl, because most of us avoid anything like the number of craniotomies you’ve been through! I didn’t want Angela or anyone else thinking your experience was typical for an AVM patient. :kissing_heart:

Richard

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