Hello all, I am ready to share the plan that we have come up with for my son Luke.
First and foremost, I want to give a heartfelt thank you to everyone on this board for all their support and genuine concern for my son and others that are battling these rare and mostly terrifying new diagnoses. This community has been a great resource for us and helped us to get to the place we are in now.
Just to recap, my 10 year old son Luke has a large 4x5 cm Right Parietal Occipital AVM that was found incidentally after a concussion in March 2024. We were referred to Cincinnati Children’s Hospital by our local neurosurgeon. Cincinnati is only a 4 hour drive from our home and they have been phenomenal in their approach to Luke’s care.
My last post was regarding trying to decide between two differing opinions for treatment. Luke’s neurosurgeon in Ohio was leaning towards starting with SRS for his treatment and Barrow had given a remote second option that stated they would recommend surgical resection with embolization as a treatment with radiation being a good alternative. I was torn between having to choose between the two opinions and whether I needed to discuss with his current Doctors the second opinion we received.
At this point, we decided to get a third opinion and chose Boston Children’s for the next remote second opinion. The opinion we received from Boston was very detailed and offered lots of great information that broke down the risk vs reward of all treatment options. Basically, surgery with preoperative embolization offers the highest cure rate >90% but will likely come at the cost of permanent loss of some peripheral vision. Surgery also poses a risk of weakness or sensory loss on his left side but could likely improve over time. Radiation on the other hand would have the lower risk of side effects but also lower chance of cure around 50-60%. Watchful waiting offers no risk with no chance of cure.
We decided to share the second opinions with the team in Cincinnati prior to our clinic visit on Oct. 29th. After discussing all the options and hearing the recommendations from the team during that visit we have decided to go with surgical resection with staged preoperative embolization for Luke. His first embolization will be on December 18th and then we will return in 3-4 weeks for a second embolization followed by surgical resection the next day.
Although coming up with a plan has felt like a weight has been lifted, coming to terms with the reality of what is going to happen very soon is terrifying and some days seems like too much. But we will carry on and enjoy each day to the fullest and we will look forward to celebrating a successful outcome and deal with whatever comes our way the best way we know how. Luke was happy with the decision and has said from day one that he wants the surgery. His attitude has stayed positive for the most part and has been handling it like a brave warrior!
We will keep everyone updated on Luke in the future. Happy Holidays to everyone and Best Wishes to all of the brave Warriors here!
I know you made a monthly donation pledge for Ben’s Friends yesterday, so you and Luke immediately came into my mind. Thank you for that monthly pledge: it is through the generosity of our sponsors that we’re able to keep running this forum and others.
As a hint to others, we are significantly short of the level of donations that we need for the year ahead: if you’ve enjoyed the support that we’re able to foster here, do please consider contributing what you can. I’ve made much of the fact that we don’t set a subscription for membership but the reality this year is that we are a long way short despite significantly cutting costs since Easter.
@Brandi3, the solidity of your decision making process is fantastic! It sounds like you’ve had very clear information on which to make a choice, though an imperfect set of options available! It feels like a very mature choice made by Luke. It’s fair to say that the approach being proposed by the neurosurgeons is very commonly used and the high success rate is something that I think we could corroborate through looking at people’s stories here.
I’ll be thinking of you all on 18th and if you let me know when his subsequent dates emerge, will do the same then. I can honestly tell you it is almost as nerve wracking a thing to cross one’s fingers and wish people here a good time in hospital as when it is someone you know much better and love. We had a very busy month of several people going off to surgery a few years ago and I bothered my way through that whole month!
Hopefully, the start of 2025 will be the start of a new life, with the beginnings of a lot less worry. It’s really good to know that finding this place and having half a dozen of us share some of our experience has helped you along the way
Very best wishes for the close of this year and all of 2025!
Hi, I also had a parietal/occipital AVM with mine being on the left side. After the surgery I did lose my peripheral vision but it came back after several months. Your son, Luke, is very young and will find it much easier to come back from any deficits he might incur from the surgery. Mine was a complete resection as well but I did not have to have any radiation. Try not to worry too much about any deficits he may face, young children are usually very resilient.
My thoughts are with you and your son on your continued journey. Positive thoughts all the way!
Please also take care of yourself, I was about 45 when I had my surgery but I don’t know what I would have done without the positive loving support of my mom.
I’m very happy to hear that you have a plan for your son that you all feel is best for him moving forward… this is never an easy decision, let alone for a parent to make… sending prayers your way to you and your family for a speedy recovery for Luke with no side effects from treatment… please keep us posted on his progress… God bless!
Thank you for sharing your experience. It is wonderful to hear that your visual deficits improved! My son’s doctors have said that because of his age there is a good chance that any deficits will likely improve over time. Honestly, it is pretty amazing how the brain works, how it can make new pathways to relearn how to operate our body.
