Back story…My 16 year olds were invited to a twin study which we have done Phase 1 in 2009 and we were re-invited back for Phase 2 back in September. Which included an MRI of both of the twins brains while playing video games. That was on a Saturday. By Wednesday, we had a phone call from the Twin Study Psychiatrist called to tell us he found a spot on Matthew’s MRI on his cerebellum …Alex was okay. He suggested that we follow up with our family doctor.
Fast forward after MRI’s, Peds Neurosurgeons, and Endo Vascular Surgeon, we have come to the appointment today that we signed papers to do surgery and will schedule surgery after his staff coordinates the Angiograms and the Childern’s Hospital room.
My son will have surgery just after his 17th birthday. I am thankful for the Twin Study. I am Thankful for the wonderful team of doctors in our area. I am Thankful for finding the AVM. I am Thankful that my son has a good attitude about this although I know he is scared.
Thanks for this board to share stories and support.
Wow, great to hear this story. Amazing to have his AVM found this way. Great to hear that the surgery is planned, and the great support. I’m married to a twin, and if your sons are like my wife and her sister, the love and support from him will be very beneficial! Thanks for being here with us, and know your among friends. Take Care, John
Welcome! I’ve seen your post in Lisas thread as well. I have to say that discovering an AVM is a very scary time but it does get better (at least, as I got used to the idea, I got more comfortable with it, though I’m a lot older than Matthew).
Ask anything you need, here or in Lisas thread, as you both have a pretty similar situation going on.
We also have a Parents and Carers category where you’ll find stories from other parents of children. I’m sure being a parent of is more stressful than having an AVM yourself. Consider joining the Parents and Carers group, too (found on the three-stripe menu, top right of each page.
Hi there…my 17 year old son had a craniotomy for an AVM 1 year ago. Check out my story on Lisas post. If your son needs to talk to another 17 yo boy that has went through it, contact me
Thanks Lisa, I will let my son know. He’s a quiet teen and doesn’t say a lot about this… but maybe if had someone to talk to that’ experienced this at his age that is his same age as well…
Hi Cori. I am sorry that your family is going through this. It is very overwhelming for a parent to have to endure this for their children. The good news is that you caught it before any rupture. We were not so lucky as my daughter had a Cerebellar AVM rupture on September 14 right before her 8th Birthday. The rupture was devastating because of all the damage and deficits that the rupture caused. My daughter is back to 90% of what she was and still improving. The subsequent surgery on November 7 was a breeze (relatively speaking) and she had no further deficits or morbidity as a result of the surgery. We flew her to Michael Lawton at Barrow in PHX ( trained by Spetzler) who is a genius and master surgeon who has done over 800 of these surgeries. Make sure your doctor is vascular trained and ask them how many of these surgeries they have done. This is a VERY delicate procedure. My daughter was on her IPad 4 hours after brain surgery. Children bounce back remarkably well and I am sure your son will do the same. Feel free to reach out to me with questions.
