It’s hard to believe that just 1 month ago someone opened up my son’s skull and took out a handball-sized chunk. And I certainly didn’t believe my report at this time could be so positive. But I remember, as a parent, hanging onto every hope when reading everyone’s stories here, so I know I need to provide hope for others who will follow.
Mick (my 15-yo son) still sleeps a lot, but his healing is nothing short of remarkable. Other than getting tired more easily, there remain absolutely no physical impairments except for some vision loss. He hopped and skipped and balanced and followed every instruction to the letter and the PT ended with one visit.
And the vision loss, which was heart-breaking to me as a parent, I confess, is also getting better as he heals. Since his AVM was left occipital, I want to expound on that here. What started as complete loss of right field of vision post surgery is now down to just a narrow strip of of blindness, a little right of center. And we have no reason to believe this won’t continue to improve. But even now he can easily compensate so it has very little effect on his daily living. His 2nd OT appointment today ended with recommendation to practice reading to build speed back up, but no new appointment. Just a “call us if you need to.”
(In the most important terms for a 15-year-old: he is back to on his video game abilities, and the occupational therapist assured him there’s no concern about getting his drivers license next year! )
Oh, and NO migraines, which is what caused us to discover the AVM to begin with. He has to continue taking Keppra (anti-seizure) till the 6-month mark, but he’s down to 2 Tylenol every 8 hours. The only pain now is really from nerves healing. And he reports some crazy bursts of rainbow-colored flashes in his blind spot which makes us hope his brain is trying to reroute signals there.
Really, a wonderful report to share. And I know that he’s been in the prayers of some here and I can’t thank you enough. @mike_az_21 said at one point that knowledge about AVMs and medical advancements make this such a better time for treatment. I’m sure that’s true, and we owe our son’s life to the skill of those who treated him.
But I’m also sure I owe my own sanity to the stories and support I’ve found in this group. Thank you all!
This is great news and sending more blessings and prayers to you and your family… its great to hear news like this and glad to see your son is doing well recovering… being young and healthy plays a huge part in that and it would be difficult for any parent to endure such an experience in life… God bless!
It is wonderful and these things can go either way, so it is always difficult to encourage people in these circumstances but it is great to be able to share in the great success stories.
As many of us know, when we discover an AVM, it turns our world upside down. To find stories such as that of you and Mick (and it is a shared story, not just his!) is what we need. Some optimism that we can get through the trial and be ok.
Dear Heather
Finally I find the occason to answer to this post. Thank you so much for your report of the wonderful healing of your son. I keep reading it. It means a lot to me for you do provide hope when it is most needed.
As I am writing this, our son is in surgery. It’s the big one today. He has his craniotomy after his 5th embolization from two days ago. They started today at 7 in the morning (European time) and will need eight to ten hours. I’m sure you know how I feel right now. My body is aching of the pain in my soul. I have to remind myself of breathing normally and thinking straight. I won’t be of any use to my son if I don’t keep it together now.
I know that our son is in very good hands. The team at Universitätsspital Zürich is highly qualified and dedicated. But then: his AVM is big and complex and agile. I pray that they will succeed. How much I want him to be okay after this. He was so scared this morning. I had told him about you and your son in the last couple of days. I had told him, that it IS possible to treat AVMs of that size.
Thank you for that, Heather.
Love Conny
Oh Conny. Yes. That last wave to him was the hardest moment of your life, no? I will send as much strength and energy into the universe for you as well as your son today as I can. And tomorrow and the next days as well.
Your confidence in his treatment team is everything right now. Really the only thing that matters right now.
If it helps, my son’s AVM was even bigger than they thought, he required a blood transfusion, and apparently he kept the anesthesiologist on her toes to regulate his blood pressure. I don’t share this to scare you but to let you know that there was nothing simple or easy about his surgery either. But those doctors are really good at what they do and they woke up this morning ready to focus the full strength of their expertise on getting your son safely through the surgery with the very best possible outcome.
I will continue to pray for your strength and his for the upcoming days as well. I know the effort ahead required of you in making sure he is as comfortable as possible, keeping track in your own head the many little benchmarks that will indicate progress, each one allowing you to exhale a little more.
PLEASE let me know if there is anything I can do to help. You are such a strong person and the past months have built up your capacity for additional courage and bravery like no one could imagine. So you don’t need me. But I will happily keep an eye on this board in case you even just want to compare notes since our sons’ cases are so very similar.
All my love and prayers and positive energy will be flowing your way.
Heather
Conny, I also just plugged you into my prayer network here. Healing prayers for your son and strength and perseverance for you. I work for the Sisters of St Joseph so this means 200 nuns and then their extended networks are praying for you by name.
Dear Heather
Thank you so much for your support. I’m so grateful for all your kind and truly understanding words… and the prayers.
It‘s done. Our son made it. We got the phone call from the doctors 14 1/2 hours after that last wave to our son. The neurosurgeon had warned us that the intervention might take much more time than the 7 hours that they had estimated.
Still, the waiting - beyond words.
The doctors are happy with how the surgery went, they are positive that they were able to remove all of the AVM. This news alone lifted a huge weight from our hearts. I still can’t believe it. Is our son really AVM free now? It will take time to let it sink in.
We got to see Janick for a few minutes at ICU. He was still heavily dosed but he recognized our voices instantly and was happy to know that we were there with him. He was in a lot of pain, headache, but most of all bedsores and cramp-like pain in his right leg. The urinary catheter hurt too. It sounds awful, but we still got the impression that he is doing really well, considering it had been such a long surgery, and he had had embolization two days before. He is so brave, our son.
Today, we will go to see him again. We don’t know yet of any impairments, it’s way too soon to say. At the moment it’s not important. We are just happy that he has made it this far. We take it day for day.
Dear Heather, thank you once more. I wish you and your family all the best.
Love Conny
Hi Conny,
What a relief! A marathon surgery and no more AVM !!! Hallelujah!
I hope that the team there is able to manage Janick’s pain well to minimize his discomfort. My son now has almost no recollection of the first 48 hours post surgery. It’s been a relief to me that he doesn’t carry that memory.
Such strength and bravery required of all of you, but I know you’d happily shoulder both his load and also yours if you could. My prayers will continue.
Dear Richard
Thank you so much. I’m so glad that I had the support of this group. I’m grateful for all the first-hand information I got about AVM which helped me to understand with my head. I’m even more grateful for all the wisdom I found from people who had been through a similar ordeal. That helped me not to lose heart.
Love Conny
on his video game abilities, and the occupational therapist assured him there’s no concern about getting his drivers license next year! 
)
