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 heās 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
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!
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 sonās doctor was very clear on the gravity of things and maybe your doctor hasnāt been stern enough but you should take every precaution to protect your son. These are only my thoughts but based on my sonās neurosurgeon that scared the daylight out of us but its better to not telling us the truth.
Hi thanks for reply. Hope your son is doing well.
Embolization is not a option for my son. Our neurosurgeon doesnāt seem to concerned about going back to sports but will definitely look into it more
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. Heās 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 .
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Sorry to hear about your sonās diagnosisā¦ please try & be positive at this time as there is light at the end of the tunnelā¦ it is a fight you need to take head on & will overcomeā¦ sending prayers your wayā¦ God bless!
Hi MOH
Every AVM is very different, so is dealing with it.
My advice: listen to your heart and use your head.
Use your head first:
Find a doctor who is very well experienced in treating AVM. Research and dont hesitate to change hospitals or doctors if necessary.
1 cm might be small - size isnāt the only factor that makes the AVM more or less dangerous. Your doctor can explain this better than me.It depends on blood flow, feeders, location,ā¦
Once you found the right team of doctors, go with their advice.
Give yourself, your family and your son some time to understand the AVM and the changes that this complex diagnosis is bringing to your lives. Maybe you want to take a break in making big plans until you feel well informed and well cared for by your doctors.
Listen to your heart:
Choosing a doctor is also a question of trust. Itās never wrong to investigate your gut feeling. And include your sonās too. He is old enough to be able to say if he feels comfortable with your choice of doctors. He will follow their advice much better if he trusts them. Think long term.
Getting the AVM diagnosis is a terrible blow to any young personās perspective on life. According to my experiences as a mother of a son with AVM itās difficult to find a way between making everything even more miserable for your son by worrying too much and scaring him more than necessary on the one side and being the advocat for his healthy lifestyle on the other side.
In our case it meant:
We would let our son go skiing recklessly despite his epilepsy caused by the huge AVM in his brain. Because he needed to feel young and free and reckless once in a while. The treatment of his AVM took over a year (it started two years after he got his diagnosis due to epileptic seizures, after he had a bleeding). There were times when he was ready to give up. We always tried to
compromise without risking too much. And we were very very relieved every time when he returned home from skiing unharmed and happy.
(I must add that our son was much older than yours. He was 21 and would not have had to listen to us anyways. Still he did.)
Dear MOH, I wish you all the best. All the best for you, your son and your family.
Love
S
Yes time ,patience and acceptance is what we need for sure.
We are bleesed that he is under the best team in Ireland and we just have to trust them completely and take their advise!
Youāve definitely summed up how Iām feeling as a parent. Wanting to keep him safe but also not wanting to scare him. Its hard but also Iām grateful hes old enough to be able to understand. Canāt imagine going through this with a very young child!
I hope your son is doing well and living his life as normal as he can.
Mary
So sorry for the diagnosis of your son, I hope you get the appointment very soon. Iām from Ireland too and 12 years ago they asked me to go to Sheffield to get SRS, they did say that we were trying to get it in Dublin.
Feel free to dm me MOH, will be happy to answer any questions or give you a listening war for any of your worries.