Positive Outcome - Living life

My son had his AVM rupture in 2012 and had surgery with a post op infection and reconstruction of his flap using ribs. He had three seizures, on Keppra for three years and titrated off spring/summer of 2017. Had a seizure January 2018 and he is chosing not to return to meds at this time.
So now after that information, I’d like to share the positive. He goes to high school, gets decent grades, has many friends, plays basketball and baseball and has a great future. He’s living a relatively normal life minus the seizure and we are thankful. I know when I joined this group in 2012, I was very stressed and felt like I was living on an edge of a cliff. After his undergoing two surgeries, I had to ask for meds for anxiety to cope and I adjusted to the fact I couldn’t control my feelings of anxiety without help. We are in a good place now. I offer this information as hope for others who are where we used to be. There are no guarantees, but there is hope.

5 Likes

Great to hear the outcome has been so positive! There has been a few new parents on he site with recently diagnosed children, I think your experience will be really beneficial. Thanks and all the best to you and Brett. John

Thank you so much for that message of hope. It will help us continue to believe.

Our 10 years old son had is left side AVM rupture in August 2018. Initially, he was speechless and totally paralyzed on the right side of his body. We were so stress of the potential outcomes. Speech came back after 4 days and he start to wiggle his right fingers the next day. After 25 days at the hospital, he done his first few steps. He was recovering fast, so every day was a little victory. He stayed at the hospital for 45 days before he was released. We are very lucking that were no major dommages to his brain. His ankle his not totally functional yet so he need to walk with a brace but there is still improvement and we hope that he will fully recover.

Since his nidus is deep inside his brain and close to the speech and mobility areas, the doctors couldn’t operate straight away. He had a new angiogram in January after all the blood from hemorrhage was gone and we are now waiting for a recommandation between the 3 technics applicables. So we hope that in the next few months, he will have a treatment that will solve the problem.

In between, he his slowly reintegrating school. It’s not easy for him since he already had dyslexia and ADHA but with the help of a tutor, he should be able to get back in track. He missing playing football but it’s not even an option for now. Hopefully we will be able to do a post like yours il a few years.

1 Like

Nadine,

It sounds like he is doing really well. I watched a TV programme last week about a much older chap who had a big stroke and his progress over 4 years to return to good mobility and health. I don’t know if it will play overseas but if it does, it may be worth watching to at least understand the stages and the rate of recovery that the patient achieved. I am inclined to think that your son is already making very good progress.

Very best wishes for a full recovery,

Richard

This is wonderful news! A big part of hope is even if you don’t believe it’s there you keep striving towards it. One foot in front of the other.
Tell him to stop being a teenager and go back on the meds. His brains in high learning and growth mode right now and even small undetectable seizures can deter its proper development.
Best wishes and take care of you too.