Hello i am 14 and have just been told I have avm in my brain. I am very new to the whole idea of avm and have no idea what is going on with me. If anyone could give any support whatsoever or any infomation I would be great full thanks
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Hello, Ellie
My name is Richard. I live in Leicestershire and I’m going through the same process as you. It’s great that you’ve found this website but I really recommend you get your parents or carers to do the research rather than working on your own.
It very much depends on the specifics of your AVM, where it is and what effects it is having for you as to what will happen and whether that will be quick or very slow. So I wouldn’t go reading up about other people’s AVMs as what they had may not be relevant to you. Some things can be very scary and I don’t think you should worry about it. You need the doctors to tell you about your AVM and what treatment you’ll have (if any – not everyone’s AVM needs to be treated) before you go looking round this site.
OK?
Promise me to talk to your family about this, not do it alone.
Best wishes,
Richard
Hey Elmarner,
Sorry to hear this! Hopefully being on this site can help. What have the docs told you so far? How did they find out that something wasn’t right?
Where abouts are you located?
Hi Richard,
Thanks for your reply, I’m very new and I don’t know much about my condition but I am having a few tests soon which will hopefully bring some more insight into what routes we can take for treatment.
I haven’t really spoken to my family about it as it’s not an easy thing to bring up but I hope speak to them about it soon
Thank you for responding I am extremely grateful for your advise
Hi Kirsty
I really don’t know much, we are aware of it because of an MRI scan due to my eye being slightly puffy, I am having an angiogram in a few days which will tell me a bit more in the Cardiff children’s hospital in Wales.
Ellie
The angiogram might be done with a “contrast material” injected, so that the blood vessels show up really clearly on an MRI. From what others have said, it makes you feel a bit poorly afterwards but is a really good way for the doctor to see what he needs to see.
After that, he will suggest what operation, if any, he might do.
I want you to look to your family for support, rather than getting information from us. Share with them that you’ve found this site because you all need support, not just you. And we will be much more comfortable sharing information with your family, or with both you and your family.
Some operations can be very scary but others much less so, so I would much rather be sure you have someone at home supporting you than you be on this journey alone with us. You come across as quite mature but you are only 14, so you should be fully supported by your family. Please show them the site.
Very best wishes,
Richard
Richard,
Thank you for your input and advise, however I do not have a very close relationship with my parents and it upsets them when I attempt to talk about my condition. I understand that everyone’s experiences are very different and so all that I was seeking was advise on how to cope with the mental side of it all but I am very greatful for what you have said.
I have a friend who has a disability so I talk about it with her instead of my parents and I have a cousin who I message quite often about it so I am not too alone in the situation.
When I next go to hospital I will be sure to discuss it with my doctor.
Thanks
Ellie
That’s fine. I know it can be difficult. I’m sure they are just as concerned about it all as you are, and have no answers. They may get some help from this community if you get to be able to talk to them.
I’m 50 and I’ve been trying to take my parents “along the journey” carefully, even though we are all adults. It doesn’t stop them worrying about me, or for that matter knowing what to say to me when I’m going through the mill.
I don’t mean to push you too hard. I just can’t really imagine being 14 and having an AVM. This stuff is tough enough for grown ups. Having said that, there are plenty of people here who had an AVM at 10 or 12 or a similar age to you, so you will have people who can understand better.
Welcome on board. We are here to support each other.
Very best wishes,
Richard
@Elmarner Are you in school Ellie? If you are, this is what I would suggest. Get with your counselor and request what is called a 504 plan. As you go down this path you will have absences and days you just don’t feel good. A 504 plan works out with the school so you aren’t penalized for those things. They can even set up "packets so you can do your school work independently. They also have resources to help you through this thing. They will also (or you can do it on your own) connect you with the medical facilities social worker to work through these things and maybe even connect you with some other teens.
I moved your original post and replies to its own thread so more folks will see it. I’m sure what you have heard, seen and read is pretty scary stuff. At least it is to most folks who come here. Some of it but not all of it may apply but MOST of the time its a watch and wait and nothing “bad happens soon if ever” but a good doc who you trust is the best source of info. Strangers on the internet - not always, but you can Learn from their experiences
I have two girls living with me (one a daughter of a former foster kid and the other my orphaned grandaughter both of whom have severere health challenges including in ones case a TBI (car accidenet NOT an avm) so I have a lot of experience working through the stuff. I can be pretty aggresive so don’t let me scare you. I’m actually a pretty nice (but old) guy and can be blunt. Sounds like you are pretty tough too.
I have also invited Seenie to jump in here. She is a wonderful lady who has many years of experience working with young women your age both in school and health issues. She is travelling right now so it may be a couple days until she pops in. But she will be a great friend.
(added later: I’m sorry i didn’t check your location Ellie. Please forgive my oversite. In Wales I believe a 504 plan is called an EHC plan and unlike the US follows you until age 25 helping you get set up in life and career.
TJ
It’s great that you’ve got good friends to turn to. I agree with TJ that talking to your school pastoral care lead would be a good idea, too, if you are finding it difficult to engage with your parents on this.
Tell us a bit more about what you know, what you don’t know, what you’re worried about. And just tell us a bit more about you… what do you like, etc. I can see you’re a big Harry Potter fan. Did you go to see Fantastic Beasts? I did.
Best wishes,
Richard
TJ
Thank you so much for taking your time to write back to me. This conversation has really made me feel happier about the situation and also more at ease with what is going on with me.
I am in year 10 so I am just starting my GCSEs so it has been quite difficult for me to keep up with my school work but I think I am coping ok.
I find it very difficult to talk to my parents about my avm so I find it easier to talk on here.
I have considered counselling however I do not know whether to go forward with it or not as I am quite nervous to talk about it face-to-face with people.
I appreciate your advise and I will be sure to take it onboard.
Ellie
I can iagine how nervous you are to talk to others, this is a good place to be. EVERYONE here gets it. You bright enough I’m sure you understand how difficult it is for others to talk to you (including your parents) You have this “THING” in your head no one sees it, no one understands it. Your parents like any parent just want to fix it. Thats one reason why letting the “proffesionals” in your school know whats going on. They do care they just don’t know HOW to care.
I don’t have an AVM, rather I have one of those unseen autoimmune diseases. It has effected every part of my being robbed me of my profession there days I can’t pull myself out of bad yet what people see is this guy who gave up a difficult impression to be a hard nosed professor and spend his days in a lab working on stuff they don’t understand (and frankly as a primary researcher i don’t understand) Now after all these year as I have part replacements every few months they are finally getting it. But I needed them to get it 30 years ago. The biggest difference now is I have my Bens friends communities where folks get it. IF ONLY I had them 30 years ago I might be a much nicer and far less cynical individual.
I;'m glad you are here and we all will be with you through this journey. We do get it. We understand those who don’t, we understand the isolation and loneliness, we understand the flood of questions doubts and fears. We are hers for you. Please stay in touch and most of all trust that we get it and our shared experiences while they may not apply directly to you offer if nothing else hope you can get through this thing. I know you can.
TJ
Ellie I’m 48. I have a daughter who will be 13 in a couple of weeks, I can imagine I would struggle to find words to speak with her if she were to have the AVM and not me. This is a great place to chat but the suggestions from others on here are really good. Its nice that you have some people to talk with, but I would take advantage of all the services available. This would include school counsellors, and I’m sure your parents are very concerned. I do get that sometimes we’re not that good at communicating.
I’ve had two angios, amongst a barrage of others tests, and did’t find them bad at all. Thy are so vitally important in helping to figure these things out and determining treatment options. Wishing you the best. John
TJ
Thank you so much. Your support and kind words are overwhelmingly loving and considerate and it has really moved me.
I am really glad I have found this website as it has given me a place to talk about this without feeling awkward.
I will make sure I keep in close contact and also keep you updated with my progress.
You have really lifted my spirits, thank you
Ellie
John
I have done a lot of research into my condition and I have learnt a lot however not all of it is applicable to me so when I next visit the hospital I will make a note of all the questions I have so I can fully understand it.
I know I am quite young for this to happen as most people only find out that they have it when they are older but I feel that I am coping ok.
Thank you for responding
Ellie
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Hi Ellie, Like you I live in the UK (Scotland) so not too far from you 
, As others have said, Having an AVM can weigh heavy on you and for you to be so young it will be hard, Have faith that everything is going to be ok, Because it is , The doctors in the UK are good, and please keep telling yourself, everything will be ok. Thinking positive will help you and make you stronger !. Being young gives you an advantage over loads of us here as this means you have longer time to recover from whatever is needed to be done. Take care and please let us know how your next appointment goes, In the UK its all a waiting game with the NHS, But its the same Doctors so still great skill.
Martin
Hi Ellie. I’m so sorry to hear about your recent AVM diagnosis. I also first became aware of my AVM at 14. But that was back in 1987 and I know things have moved on a lot medically since then. I think in the majority of cases people are born with AVMs. They are abnormalities of the central nervous system where arteries and veins become tangled and conjoined. If an AVM bleeds it can be serious or it can have little effect. Noone really knows until it happens. Depending on the location in the brain it might be possible for doctors to remove or treat your AVM by surgery, embolization or gamma knife. Personally my AVM has not been treated and I have decided to leave it be. This is because it is in an awkward place and the risk of deficit from any treatment is sizeable for me. Fortunately it doesn’t cause many day to day symptoms so I am living with it. Best of luck in whatever you decide. Please consult a neurosurgeon if you haven’t already done so.
Just to give you a little info of being young with an AVM. I had just turned 10 when my brain AVM ruptured back in 2000. It was a hard 3 years. But remember mine wasn’t spotted till it ruptured. You have had the luck of them spotting it before that could happen. Lucks on your side. God bless and merry Christmas.
Elmarner, welcome here! This is Seenie from ModSupport: I work all over Ben’s Friends with TJ, who you have met, and Meli who will introduce herself to you one of these days. We are so glad that you found us: this is a peer-to-peer group where people understand what it’s like, and where we support each other.
As John O said, you are really lucky in many ways: they found your AVM before it became symptomatic, and you live in a place where you can access excellent and expert care. It IS going to be all right. Maybe not easy, but all right. I have a feeling that you are very bright and capable and that you will learn and grow with your experiences.
My colleague TJ from ModSupport lives in Montana, USA. He’s a retired prof who knows loads about medical things. Me, I’m retired too, but I used to work as a teacher and a counsellor in high schools here in Canada. I’m married to a Brit transplant who grew up in North Wales, and we still go to the UK often to visit friends. I know a bit about the school system over there, and TJ is so right when he tells you to get together with your parents and the school counsellor (and I think you need to have the head teacher in the loop too). That is so important: they all need to know that you may need special consideration at some point. Maybe you won’t, but it’s important not to wait until there’s a big problem.
So DickD asked you to tell a little more about yourself.
Elmarner, Croeso! This is Seenie from ModSupport: I work all over Ben’s Friends with TJ, who you have met, and Meli who will introduce herself to you one of these days. We are so glad that you found us: this is a peer-to-peer group where people understand what it’s like, and where we support each other.
As John O said, you are really lucky in many ways: they found your AVM before it became symptomatic, and you live in a place where you can access excellent and expert care. It IS going to be all right. Maybe not easy, but all right. I have a feeling that you are very bright and capable and that you will learn and grow with your experiences.
My colleague TJ from ModSupport lives in Montana, USA. He’s a retired prof who knows loads about medical things. Me, I’m retired too, but I used to work as a teacher and a counsellor in high schools here in Canada. I’m married to a Brit transplant who grew up in North Wales, and we still go to the UK often to visit friends. I know a bit about the school system over there, and TJ is so right when he tells you to get together with your parents and the school counsellor (and I think you need to have the head teacher in the loop too). That is so important: they all need to know that you may need special consideration at some point. Maybe you won’t, but it’s important not to wait until there’s a big problem.
So DickD asked you to tell a little more about yourself. We’d love that: when people share their stories here, we develop closer friendships. Be careful, though, not to reveal identifying information, or your email address on the public board. When you get to know people better, you might choose to share a bit more information off the board, using the private message system. (You know when you are messaging, because your screen shows the envelope icon.) Ben’s is a great place because we can share and be open and honest, but at the same time remain cyber-safe.
Like TJ, I have a mostly invisible illness, Psoriatic Disease (sometimes called Psoriatic Arthritis). It restricts my mobility, and it has wrecked a whole bunch of my joints. I came to Ben’s feeling really down and worried, and the people in my community really helped me cope. Now I get a lot of satisfaction from helping others, there and on the other Ben’s boards.
Take good care, Elmarner! Hang in there, and hang out here.
Seenie from ModSupport