13 year old Sons AVM diagnosis Ireland

Hi there

New to this page.
My 13 year old Son was diagnosed with AVM 6 weeks ago after a bleed.
He was playing a match and became unwell. Headaches, dizziness, vomiting.
He definitely had symptoms couple of weeks beforehand so rupture most likely did not occur from playing sports. Doctor said rupture could have happened while watching TV!
His symptoms are a result of fluid being slow to drain according to Doctors.
Looking back though his very active days were days when he had symptoms.
Sugery is not an option so we are waiting on an appointment for SRS in BH Dublin.
The AVM is less than 1cm

Just wondering how soon after SRS can your life go back to normal.
My son is eager to get back to playing sports.

Also we have a holiday in Orlando booked for December 2024. It was booked previous to son being unwell
Thinking maybe we should postpone it now.
Long flight and rollercoasters may not be the best idea but also he was really looking forward to going and definitely deserves the break after all he’s been through!
Doctors said there is no evidence that sports,flights or rollercoasters can cause a rebleed but maybe for the worry factor it is better to postpone.
Would appreciate any advice or thoughts on this!
Mary

1 Like

Hi there! Fellow AVM survivor here across the pond. I have not been treated in Ireland but at Duke University in Durham, NC but in Ireland specifically Dublin at Beaumont Hospital they do treat AVM Beaumont Hospital Beaumont Hospital, Dublin - Google Search. Blessings as you continue!

1 Like

Hi,

Fella paddy here who had SRS in Beaumont a month ago. Just posting to say hi, ill answer properly asap.

Feel free to message me if youd like a chat.

2 Likes

I would put a hold to sports until the AVM has been obliterated. His life needs to slow down. You can make the trip but no high speed anything. His life and yours needs to change until obliteration is confirmed. My son’s doctor was very clear on the gravity of things and maybe your doctor hasn’t been stern enough but you should take every precaution to protect your son. These are only my thoughts but based on my son’s neurosurgeon that scared the daylight out of us but its better to not telling us the truth.

2 Likes

Is Embolization available for your son? My son got both Embolization and Gamma Knife. Just wondering …

Hi!
Thank you for reply! Hope you are well. Look forward to hearing from you. I will message you to chat sometime for sure

1 Like

Hi thanks for reply. Hope your son is doing well.
Embolization is not a option for my son. Our neurosurgeon doesn’t seem to concerned about going back to sports but will definitely look into it more

2 Likes

Anytime. You can contact me anytime. My son is doing well. Thanks for asking but even so he is bearly returning to drumming the neurosurgeon said no since it can raise Blood pressure and he prohibited anything that would raise his BP. He’s returning because of Embolization and Gamma Knife but mainly due to Embolization due to minimal risk of seizure or hemorrhage. Without it, we would have to wait on Gamma Knife to obliterate AVM years from now and would avoid anything that would raise BP. Your Doctor may have his justification to not worry about it but please make sure he makes more than enough sense. Protect your son at all cost .

1 Like

If you ever want to have a conversation off the public space, click on the icon of the person you’d like to chat with and select the blue “Message” button.

To continue a conversation, you’ll find your messages under your own icon, top right of the page and under the envelope icon. Press the little grey envelope icon twice to get to your inbox.

2 Likes

Sorry to hear about your son’s diagnosis… please try & be positive at this time as there is light at the end of the tunnel… it is a fight you need to take head on & will overcome… sending prayers your way… God bless!

2 Likes