Hi everyone. My 16 yo son had his craniotomy 2 weeks ago today. The surgery was a complete success and he had total and complete removal.of AVM. He did get some residual left side paralysis for a week following the surgery due to something called SMA syndrome from irritating( not damaging) that area of the brain. He went to an inpatient rehab last Wednesday and went from left side paralysis to back walking in 3 days. The neurosurgeon told us once the swelling and irritation went away, his feeling and movement would all come back. And it did…and quickly. He was released 2 days ago and is home. He is walking but we have to be right by him. He will be going to outpatient rehab until he has full mobility back which they feel will be quick. His headaches are gone, he is off all meds except anti seizure and blood pressure meds, which will be weaned starting in 2 weeks. He says the feeling in the left is hypersensitive right now as it just all came back. He has no deficits and is expected to be back playing baseball by the summer. Thanks for all.of the encouragement! I must mention he never had any symptoms or never had a bleed from his avm. It was found by chance. We went to a top vascular neurosurgeon and facility and I think that made a difference for sure. We got second opinions from UCLA and Dr. Lawton at UCSF. They both said surgery was great option as it was accessible without any real risk of deficits and surgery would be low risk for him. Only maybe a little temporary left leg weakness. I thank God for the successful embolization and craniotomy and full return of his left side. I wish you all success and healing!
Lisa, what wonderful news! Thanks for sharing it with us.
You’ve learned so much in the last six weeks or so: I remember well your coming here with anxiety and questions and in complete emotional turmoil. We’re glad it has all turned out so well for you: your whole family has suffered the trauma, and together you braved it and now you move optimistically forward.
Please don’t leave: others here need your strength, your experience and your wisdom. Share what you’ve learned, and extend the encouragement we gave you, with others. You have so much to give!
Thank you again for the encouraging and positive news. All the best to your son and you.
Seenie
Lisa that is wonderful news
I have only been on here a short time but it has been so helpful to follow others progress and be lifted by everyone’s positivity
M
Lisa,
That is wonderful news! We are rejoicing with you and your family on your son’s good outcome. Thank you for sharing your update. Your son must be thrilled that he will be back to playing baseball by summer. My daughter just had her second embolization last week and we will have another embolization and surgery in 3 1/2 weeks. We will be praying for continued progress and healing for your son.