Hello everyone, I hope you are all doing well. I would like to take some time to welcome and introduce our new members.
@Naila is an intern for Ben’s Friends from California, U.S. She is a patient herself, diagnosed with inflammatory bowel disease at age 12. @Naila is excited to continue to learn from others and share some of her own experiences through her work with Ben’s Friends!
@Brandi3 has a 10 year old son with an AVM that was found incidentally after sustaining a concussion. They are still in the early stages and will be having a consultation at Cincinnati Children’s Hospital in June 2024.
@suzyq is a patient from Durham, England. She had an AVM found in 2008 after suffering with migraines since the age of 13. In 2024, she had a bleed and was told the AVM had changed significantly, and was classified as a grade 4 in the left occipital region with aneurysms. She is currently awaiting a date for treatments.
@marieclaire12 is a patient from North Yorkshire, U.K. She was diagnosed with AVM after a seizure in October without warning or any history. She is currently awaiting consultation in Sheffield.
@Tydale is a spinal patient from Virginia, U.S. After having a baby, her spinal cord unexpectedly ruptured at work and it took two days to figure out what happened.
@lilcookie is a patient from Alberta, Canada. They have an MRI and an MRA indicating suspicious vessels, possibly relating to an enhancement at T10. They are currently fighting to get a DSA as the doctors are more interested in a diagnosis of Functional Neurologic Disorder.
@Jayjones is a patient from Ontario, Canada. They had an AVM that was removed successfully, following a previous misdiagnosis for CVB and surgery, in 2018. These days @Jayjones is well, but tires easily after cardio.
@Matina is a patient from Attica, Greece. After two brain scans, she was diagnosed with a 1.7cm brain tumor, causing an array of symptoms on the left side. @Matina needs opinions on treatment going forward, including gamma knife, cyberknife, or any additional suggestions. Surgery is not suggested as the tumor is located deep in the cavernous sinus. Although she doesn’t have an AVM, she will be joining the community for potential support and any advice our members may have for her.