18, just diagnosed, sobbing everyday

Last week I discovered my AVM in my right frontal lobe due to an MRI my neurologist requested after a seizure. I didn’t even know what it was. I have had a history of anxiety and depression and when I was 15 I had attempted suicide. Since then (I’m 18 now) I have come a long way and began enjoying life and thriving. This news ruptured my view of the world. The doctor doesn’t recommend surgery because it would be very dangerous. I can’t can’t can’t stop thinking about how at any second it could bleed and I may never be the same. Whenever the thought passes through my head (about once every 2-10 minutes) my eyes begin to water and I feel a massive weight on my shoulders.
This is all initial shock I’m assuming, but it breaks my heart that dreams I had might be too dangerous for me now (long term: becoming an astronaut, having a child). I have almost no motivation for school or work and everyone is asking what’s wrong. This has got me very shaken up. Thanks for listening.



Wow. You are taking on big stuff at a young age. I completely get how this is a big hit. I have to say pretty much everyone who gets an AVM diagnosis without a bleed arrives here feeling rather like you. I was in shock in the same way when I got my initial diagnosis. What I’d say is you’ve got to let your mind get used to the idea that life has changed. It hasn’t come to an end… It has just changed. Take your time and talk to people here. The idea is we walk through this together.

That you’ve been told that an operation is not recommended means you’ve gone a long way through your diagnosis without being able to share with others. There are other people here in the same situation, who have been told surgery is not an option. Equally, sometimes it is worth getting a second opinion, as opinion does vary between doctors or between doctors of different specialities.

So… Welcome. You are among friends. It is great you’ve found us.

I do wish you all the best. It really isn’t the end. The way to look at it is that if you start to feel poorly, you’d know to go to hospital and get it looked at urgently rather than not knowing what’s making you ill. It is much safer to know what it is, though it might seem nicer to not know.

Lots of love,



Hi I’m so sorry to hear this my daughter was 17 and in February she also had bleed to her brain then ten days later she had to have major brain surgery in which her skull was cracked open and her AVM removed she is on the road to recovery and it’s been very hard stressful road she too suffered a lot from anxiety depression before this happened she also has Asperger please don’t give up be thankful for everyday hopefully there will be light at end of the tunnel god bless :kissing_heart::heart_eyes::heart:

Shannon, its great you’re here, and certainly have been through a lot! You’ll find a lot of varied experiences here among the forum members and willing to share what they’ve been through. There is a lot of uncertainty with these things in most cases and often varied options depending on who the Doctor may be, as Richard said. Might be worthwhile seeking another outlook, there is other options to explore beyond surgery, in my case it was gamma knife. My specific circumstances made it the best option, surgery was too risky, the size and location led me to gamma.

You’ll find a lot of support here, from a strong group of people who as patients, relatives, and caregivers have a lot of experience and have been through a lot. I really struggled when I got home from the hospital after my bleed, but as my understanding grew, my outlook changed and I took each day one by one and made the best out of them. Take Care, John

Hi Shannon,

I just got my diagnosis in August. Like you, I started out thinking about it constantly. In a way, that was good because I have been reading journal articles like crazy and have learned a lot. One of them said outcomes are best with surgeons who do at least 30 procedures each year. Ask your surgeon how many he/she does and if it’s less than 30, get a second opinion from someone with more experience. When I asked, I found out my surgeon had only done two procedures on AVMs in the last year. I’m planning to get a few second opinions from the top hospitals in my area.

Also, my anxiety has led me to prepare myself. I got a MedicAlert necklace I wear under my shirt to tell paramedics my condition. I have an emergency app on my phone. I’ve told people everywhere that I spend time about it and to call 911 asap if I pass out. I bought a car that has automatic breaking and keeps you in your lane. I avoid freeways if possible. I have about a 50/50 lifetime chance of rupture at some unknown time. It helps to have a plan in place and know what to expect. Ask an experienced doctor, what exactly you would feel during a bleed, so you will be ready. Have a plan in place.

Finally, I’m starting to let go of “future”. You’re very young, so you have to plan for work etc. Make sure it’s something that you’re going to enjoy now. I’m no longer working toward retirement and leaving my travel and projects to future years. The time to do is now. This has been freeing for me as I have always been a worrier full of anxiety. I no longer worry if I’m doing the “correct” job for me or live in the “best” place for me, etc… I try to be happy and good to people in the moment. I just live each day and try to enjoy whatever happens to be around. If that seems totally impossible, check out MBSR meditation (or any kind of mediation really…zen is good too). It trains your brain and helps build neuro paths that will let you live mindfully and reduce the stress of this thing. It helps me a lot.

Take care,


I found that getting myself set up with a medical bracelet helped me feel protected. I’ve got one that is like the various rubber bracelets that you get for all sorts of charitable causes, but there are all sorts of styles available, some subtle and others less so.

I think it is a good idea to set emergency contacts into your phone. Mine doesn’t have such a facility, so I edited the picture I wanted on my lock page to include my “ICE” details. “ICE” is a term used in the UK to mean “in case of emergency…” And any UK ambulance-person would look for medic bracelet, necklace and mobile phone ICE details.

Tell your friends you have a weird condition and if you are acting strange, to dial 911 and relay the details on the bracelet etc.

But this is just about being prepared if something does happen. It doesn’t mean it will. It certainly doesn’t mean it will happen today or tomorrow.

I have a relative with a genetic condition that means she may get past 30 but she definitely won’t get past 40 without a miracle. She’s already 20 and she’s known about her issue for a long time. It doesn’t stop her making the most of the health she has now, albeit there are some things she doesn’t plan to do.

So… don’t be put off. Carry on. You’re very wise to recognise initial shock.

Very best wishes,




I don’t know about being an astronaut, but you will very likely be able to have children and enjoy the rest of your life. I know how devastating it is to be to be diagnosed with an AVM at any age. It changes your life in many ways, but good things can still happen for you. Your life is not over, it’s just a little more complicated. This site is perfect for you. We will lend support and encouragement whenever you need it. We are all taking the AVM journey and we all have a different story to tell. Talk to your doctor’s about your fears. Research and learn more about AVM’s. Then, when and if you are ready, you can explain to others about your unique illness. Take it one step at a time. Be patient and be prayerful. Keep us posted on your progress.

Sharon D…


Hi there Shannon,

First of all, im so glad you joined this website! You’ll find many people on this site have gone through the panic and fear of the potential of a bleed. I was 22 when I was diagnosed (last summer) and my symptoms meant I had to defer graduating university. I felt pretty terrified about my future prospects too.

When you say surgery - do you mean craniotomy or like any treatments? For me I was told craniotomy was too dangerous however I will take the emolisation + gamma knife route instead. Try to get some second opinions on whether these less invasive options could be safe for you too?

You have to try to remind yourself - the doctors had to weigh out the pros and risks to treatment. If they believed you were at high risk of a any-minute-now bleed they would be rushing to do something asap.

If I remember correctly, the risk of someone with an avm who hasnt bled of having a bleed each year is something like 2%? It is a risk, but if you consider how many risks we take every day. Like we know theres a chance of dying in a road accident when going into a car or crossing a road or board a bus. We put on our seat belt or look both sides of the road and accept the risk. Same with this AVM, we take precautions (no heavy lifting, no sprinting, no smoking, avoid excessive drinking) and we keep going.

It feels horrible finding out but we are so lucky we found out before any bleed happened. This means we can keep an eye on it, look at treatment options and avoid things that can annoy our avm. Before knowing about this avm, I honestly took life for granted. It was a wake up call in a good way.

Your life might change and you might have to adapt, it is a possibility. But - there are many routes to the same destination. There is nothing saying you wont have a happy and fullfilling life :hugs: it makes you realise life isn’t a promised thing, and you’ve got to treasure all the big and small opportunities in life. This feeling your having now is temporary, you will feel better soon. Its good to cry it out and accept the diagnosis and know that giving up isnt an option!

My friend from secondary school went from having to be home schooled, go through chemo and losing her hair at 13 - to being top in all her classes, getting into medical school to be a doctor, developing a great group of friends and growing a long luscious head of hair. Never met someone whos so happy and motivated.

You are more than welcome to pm me whenever and happy to exchange numbers for easier messaging. Your never alone, keep reaching out to us whenever.

Best wishes,

Corrine :grin: xxx


Hi Shannon.
Welcome to the family here. You are among friends here.

I was diagnosed around July this year, pre-bleed like you. I immediately did a LOT of research after being told, to learn what I could. Mine was located towards the bottom in the right occipital and on the surface of the brain so the surgeon didn’t have to go digging. Embolization was tried first but didn’t get it all. Still, embolization is also the first step taken before craniotomy, to shrink it and minimize bleeding. I knew that going in so wasn’t so surprised at the outcome.

You are so young to be dealing with this and I know it was a shock to be told you have an AVM. I’m sure your parents were surprised as well. I had never heard of AVMs until I was told I had one; nobody I knew had any idea what an AVM was either. Since your doctor said surgery isn’t an option (or is it not an option now but maybe later?) would embolization be a viable option for you right now? It could help minimize or even prevent a future bleed. Gamma knife is another option too, was that discussed with you? And getting a second opinion can be a good idea too…find someone who does a lot of these surgeries (either AVM’s or aneurisms). Did they tell you how large your AVM is? Is it deep inside the frontal lobe? Do you have high blood pressure? If it’s quite small and your blood pressure is good it may not bleed at all despite decades going by. If people ask what’s wrong you can tell them what you’ve learned about AVMs. When people asked me I tried to educate them about it so they’d understand. And they will if you teach them. Like me before my diagnosis, hardly anyone has ever heard of AVMs and have no idea what they are or how you get it.

My surgeon does mostly aneurism repairs or preventative clipping and hadn’t seen an AVM in 19 years. So far in his career (just over 25 years and counting) he’d done about 4 AVM removals but all that previous aneurism practice helped too. He did a great job IMHO. Turns out mine was on the verge of rupturing and having a major bleed. Since you’re born with AVMs, my having it for over 50 years without a symptom or a bleed makes me feel like I was one of the very lucky ones. It was two major arteries feeding into one vein. I am grateful to be alive. Every day is a gift for me now.

Life will never quite be the same post diagnosis with AVM. It’s a rare condition affecting less than 1/2 of 1% of the population. Like you I was worried too the first few weeks after my diagnosis. I did research online, and it took a lot of fear away for me. Knowledge is power. In fact, on the day of my craniotomy I was more worried about my elderly cat being boarded at the vets for the first time in his life than I was worried about myself and the surgery.

You are NOT alone is this. All of us here have been dealing with this same condition for various amounts of time. It might preclude you from actually going into space but not from joining NASA in some other capacity. It doesn’t have to keep you from having children in the future either. The doctors just have to keep an eye on the AVM during the pregnancy and the actual birth might be via C-section to minimize blood pressure spikes.

You DO still have a future! Anytime you need to talk, vent, shoulder to cry on, etc. you can come here and at least one or more of us will know EXACTLY how you feel.



I was 15 when I got diagnosed through an MRI. I also have anxiety and depression. Please PM me, I’d really like to be able to talk to you about it.

XO, Jenn

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I forgot to mention I’m 18 now too!