Is there a light at the end of this tunnel?

Support Parents and Care Givers of AVM Patients
, ,
1

Hi everyone,

My 14-year-old healthy, athletic son had a sudden posterior fossa AVM rupture on October 1st while sleeping — something I had never heard of before. No symptoms, no warning signs.

He woke up screaming that his head would explode, and minutes later he lost consciousness. He had an EVD, emergency embolization same day of the event,

and we have been living in the hospital ever since — we still haven’t gone home.

Today he breathes completely on his own through a tracheostomy, opens his eyes, has partial awareness, and follows simple commands. His legs move well, and his left hand is stronger than the right. He had a VP shunt placed last week.

Every night I feel like I’m living in a dream — like this can’t be real.

But we are holding on tightly to every small sign of progress.

If anyone has experienced a similar posterior fossa AVM rupture in a child or teen and seen meaningful recovery, your stories would mean so much to us.

Thank you :folded_hands:

7 Likes
2

Hi,
I’m so sorry this happened…
I’m not going to give you any advice about this…but you need to be strong for him…
You need to help him heal and become the new him…
What did the doctors tell you?
Did he have surgery? Did they surgically remove the AVM?
How big was it…?
Best of luck!

-Amareea

2 Likes
3

Hello there,

My 9year old boy had same AVM last January 2, 2025, he was taking a bath when suddenly he fell on the ground. I thought at first he just slipped. Brought in ER since he was vomitting… and crying. After thorough test with CT Scan, MRI, found out it was bleeding in his AVM. He is also athletic active kid, we have no idea about AVM… no symptoms at all. It was a shock for us. He was in ICU for 3 days. After 24hrs his cognitive response return, weakness on his right arm and right leg. We were transferred to a private room after 3 days and stayed for 5 days more. We were preparing for his Gamma Knife Surgery after 4 weeks when hematoma is healed. We did Gammaknife on February 4. And from that time.. he is back to his normalcy but we are cautious with contact sports. We have routine yearly MRI for 3 years.. for monitoring.

By God’s grace alone. Praying for the recovery of your child. This is a nightmare for every parents.

But lets hold on to hope of recovery🙏.

5 Likes
4

My daughter’s avm is in a different location.

Our story is very different. I just want to wish you lots of strength during this trying time.

4 Likes
5

Hi, sending you lots of love and strength.

We are currently going through similar, my 12 year old suddenly had a headache 18th Oct, vomiting, dazed and confused with his eyes rolling back. We rang an ambulance and after a CT scan confirmed there was a bleed. We was transferred by ambulance to another hospital an hour away and straight into theatre before going into ICU. We was then told he had an AVM in his cerebellum. A couple of days later he had an angiogram to seal the AVM which was successful. We are still here in hospital. Recovery has been slow and my son has not dealt well mentally been here due to his autism. He is dysregulated and overstimulated. We believe this has caused him to continuously vomit and he’s now skin and bones. He also had 3 falls out of his bed, one resulting in splitting his chin open.

His limbs seem to be working ok, but he can’t take more than a step yet and has just started working working with physio.

I wish your soon all the best and I hope recovery goes as well as possible.

3 Likes
6

His avm was in cerebellum too?….he was in a coma ?

I really hope the gamma knife it will work

7

Welcome @Tamer! Welcome @Charlb!

We always say that it is the greatest pleasure to meet you, it is just a shame about the circumstances in which we meet!

I am very pleased to see that setting up this site in the way that I have – that when parents post in this area of the site, you get a notification to other parents – and a few people have already been able to say, “Yes, we are going through much the same.” That you’re both new to the forum and have been able to meet already is perfect in this way. Welcome!

Yes, there’s every reason to think there will be light at the end of the tunnel.

Recovery from a stroke is often long. A month is very short, really, in the scheme of things, so there is everything to be hopeful for. It is good to hear that he is making the progress that you describe. I don’t doubt that progress will be much slower than you’d hope for but progress is what you need.

My main incitement at this stage is to remember to look after yourself. It is very easy as a parent to be distracted by a disaster like this, to neglect your food or drink or sleep or rest or other family and that’s not good for you. It will be a long journey: this is not like breaking an arm, setting it in plaster and removing the plaster in a few weeks time. No, it will take a long time.

So you need to make sure you get through that time, looking after yourself physically and looking after yourself mentally, too. As he gets better, so your role will change to becoming the carer not just the worrier, and you’ll need to be able, fit enough etc, to take on that role and do it in a sustainable way. Please remember to eat, drink, sleep as you normally would. It is very much like being on an aeroplane and told to fit your own oxygen mask before helping others. It is unnatural but it is important to prioritise yourself in this way so that you can help him. If you do yourself an injury through neglect, you won’t be able to help him when he needs it.

@Charlb you’re obviously still much more involved in your son’s care than @Tamer perhaps at this time and that involvement is obviously good in terms of you helping him to deal with the situation. My incitement to remember yourself is still important!

Both of you, ask anything you need. Have a read through the stories on the site. We’re here to help.

Welcome.

Lots of love,

Richard

3 Likes
8

I am so sorry. We had a similar situation - My 11 year old (he was 10 at the time) who was also healthy and athletic had a AVM rupture on January 16 that woke him up while he was sleeping. He also said something similar about it feeling like his head was going to pop. Like your son, there were no symptoms, no warning signs and I hadn’t even heard of an AVM prior to this. However, his AVM was in his right frontoparietal area. Short story is he had his AVM removed in March and is back to about 90% of his previous ability. After the stroke, my son could not sit up, stand, walk or use his arm/hand on his left side. It took about 6 weeks post stroke (including 4 weeks of inpatient PT) for him to be able to walk with a walker. He is now able to walk without any devices and just wears an AFO on his left foot due to the remaining hemiparesis and spasticity. He has come such a long way and I suspect that you son will too.

I agree with Dick that recovery from a stroke (AVM rupture) takes time - it is infuriating and heart breaking, but unfortunately it’s the truth. I know seeing your son like this for a month already seems like an eternity.

Hugs to you and your family and wishing you strength in this difficult time.

5 Likes
9

Hi joane ,

Thank you so much for sharing your son’s story. I’m truly happy he recovered so well — it gives parents like us a lot of hope.

My son’s AVM rupture was in the posterior fossa, and he developed hydrocephalus immediately, so he needed an emergency EVD and embolization on the same day. We’re still in the hospital with slow but steady progress.

Stories like yours really help us stay hopeful. Thank you again for your kindness and prayers. :folded_hands:

1 Like
10

Hi ameraeea,

Thank you so much for your kind words.

We’re trying our best to stay strong for him.

His AVM was in the posterior fossa, and it ruptured suddenly. The doctors had to place an emergency EVD and perform an embolization on the same day to stop the bleeding. They didn’t remove the AVM surgically — they stabilized it with embolization.

We’re still in the hospital, and he’s making slow but steady progress.

Thank you again for your support. It truly means a lot. :folded_hands:

2 Likes
11

Thank you so much for your kind words.

Even though our stories are different, your support really means a lot to us.

Wishing your daughter continued strength and good health as well. :folded_hands:

12

Thank you so much for your message and your support.

We’re trying to stay strong for him. His AVM ruptured in the posterior fossa, so the doctors had to act very fast. He had an emergency EVD and embolization on the same day.

still in the hospital and recovery is slow, but we’re holding on to hope.

Thank you again for your kindness — it really means a lot. :folded_hands:

13

Thank you so much, Richard.

I really appreciate the warm welcome and your kind, encouraging words. It means a lot to us during this difficult time.

You’re right — this is a long journey, and I’m trying my best to stay strong and take care of myself so I can be there for my son. We’re still in the hospital and taking things day by day, hoping for continued progress.

Thank you again for creating this space and for supporting us.

It truly brings comfort to know we’re not alone. :folded_hands:

2 Likes
14

Thank you so much for sharing your son’s story. I’m really glad to hear how far he has come — it truly gives me hope.

My son’s rupture also happened while he was sleeping, and like you, I had never heard of an AVM before this. His was in the posterior fossa, so things became serious very quickly, and we are still in the hospital. Recovery has been slow, but we are holding on to every small step forward.

You’re right — one month already feels like forever. But hearing about your son’s progress reminds me that healing takes time and that improvement is possible.

Thank you again for your kindness and strength.

Sending hugs and wishing your family all the best. :folded_hands:

15

Hi. I’m sorry to hear about your situation. Here is my story:

I was 16 years old and had just started at a soccer high school. I played football several times a week and was completely healthy until the brain hemorrhage occurred. After radiation treatment and two years of rehabilitation, I was declared healthy and was even able to start playing football again at the age of 18!

3 Likes
16

Hello Tamer,

Another mother here with a similar story. Different location, parietal right AVM in our case.

A month of intensive care, emergency EVD, rehabilitation sessions, 2 embolisations and a craniotomy within the space of 8 months, my daughter is recovering well. She will be monitored for the next 10 years as it can grow back.

We understand your fear and stress. It is a long bumpy ride.

Take care

2 Likes
17

Hi Tobias,

Thank you so much for sharing your story It’s amazing to hear how far you’ve come — from a brain hemorrhage at 16 to being healthy again and even returning to football.

Your message gives me a lot of hope for my son. He is also very athletic, he plays soccer and I really wish that one day he can get back to doing what he loves, just like you did.

Since you had hemorrhage you mentioned you had EVD but did you install A VP Shunt ?

1 Like
18

Hi Bibi,

Thank you so much for sharing your daughter’s story.

I’m really glad to hear she is recovering well after everything she went through. It gives me hope to read stories like yours.

My son also had an emergency EVD and a long ICU stay, so I understand exactly what you mean about the fear and the long, bumpy road. We’re still in the hospital now, taking things day by day.

Thank you again for the support.

Wishing your daughter continued strength and recovery. :folded_hands:

1 Like
19

Hi,

No, no shunt were needed. My avm stopped bleeding by it self and after the radiation treatment it slowly began to fade away. After two years it was all gone. But during the two years that the radiation was acting I lived a very limited life as a teenager. Since doctors told me that as long as the avm was still there, a new hemorrage could occur

1 Like
20

@Tamer

There’s light but it will shine bright and dim.

I was 19 when I ruptured without warning or any symptoms.

Joined the trach club too and thankfully someone in ICU did physio and my muscles were worked for me as I was out for some time.

There was a lot of steps forward and then 2 back but after a year I was semi independent again. I’m still alive over 30 years later.

As your son is young his Brain may well make new control paths or reconnect existing ones. You won’t know now. It was probably 5 years to get a complete picture for me although most recovery was within 12 months.

Best wishes

Tim

3 Likes