Hi Everyone, we are new to this site and thankful for all the the stories and experiences shared. Our 14 year old daughter was diagnosed with an AVM about a month ago. She plays soccer and had a pretty good blow to the head which led to a CT scan. The scan showed no signs of a concussion but did reveal a large AVM in her left frontal and parietal lobes. We have an appt. with Vanderbilt pediatric neurosurgery Nov. 2nd. The waiting has been hard! Thank you so much for your willingness to share your stories, my husband and I have been touched by your incredible strength, honesty, and courage! We adopted our daughter from Ethiopia when she was 5 years old. She has already experienced such difficulty and hardship that we hate that she now has to go through this! We are thankful that we are the ones that get to walk this journey with her. Blessings to each one of you!!!
Thank you for visiting and its great that you are learning here also , This is where I also found out most of my AVM information and obviously verified what I needed via my surgeon also. Welcome and take care
It sounds to me like she’s got the best people to help her through this (meaning you)! It is all quite scary but I agree with you, there is an amazing community of very brave people here who’ve already gone a long way through the mill.
Sending you lots of love and very best wishes…
It’s good to hear that they spotted the AVM before it could rupture. Trust me it’s bad when it does. I was 10 back when my story started. I’m shore that you will see some strange ways that they scan and examine the brain. Best of luck to you and god bless.
Its great your on here Joy, and yes the experience here is amazing. I wish the best to your daughter, she obviously has incredible parents! The love and support is so important, along with patience and prayer. You are in our thoughts, take care.
My 13 year old son had an AVM that created a flow thru aneurysm that ruptured and created a 7cm bleed on his right temporal lobe on May 15, 2016. He was in the middle of playing a baseball game with no prior symptoms. He too had a concussion earlier that fall but not cat scan done. He was in ICU for 12 days and then Acute Inpatient Rehab for another 45 days. He has left side hemiparesis but can now walk but not able to run or use his left arm/hand purposely yet. It is great that they were able to diagnose the Avm before it ruptured. My son had several Angiograms to map out the flow of blood feeding the Avm, then glue it with onyx and a final surgery to resect the Avm. He will have another Angiogram in may 2017 to confirm no further growth. But because of the rupture, he will continue with therapy for the foreseeable future. I pray for all of you as I know how difficult this is. I found a lot of hope reading this site for hours whole my son was in ICU…there are amazing stories of hope and perseverance. Know you are not alone. Jenny
That must be so frightening for you as a parent . I was also adopted and diagnosed with a large AVM on my left frontal lobe at the age of 16 (back in 1984) . Now all these years later I am an RN and a Midwife with a husband and found beautiful sons . I had 2 craniotomies in 1984 and saw the stress my parents went through but it wasn’t untill I had children of my own that I could really grasp how painful the whole thing was. Try to be kind to yourself though this as well it is often the parents and family that are emotionally depleted through this process . The science has changed significantly since the 1980s but how we love our children hasnt . Hope all goes well ( from Australia)
Best wishes to you and your family, most importantly your daughter!! Learning you have an AVM is very daunting and deciding upon treatment is a scary task. My thoughts and prayers to y’all
Thank you all for the kind words. Unfortunately, Hannah collapsed and was unresponsive last Saturday at a church youth retreat. She was life flighted to Vanderbilt. Thankfully, there was no brain bleed. She did have a seizure though. This has been the scariest thing we’ve ever experienced! We were in ICU until Monday. We have a head angiogram this coming Thursday. We love the neuro team and are thankful to be so close to Vandy.
Gosh, Joy! What can I say? It sounds like you’re starting the Difficult Journey. I would it were not so. Thinking about you all and sending you all my love and very best wishes… Richard