Hi everyone! I am Naila, a new community moderator for the AVM community! I have been involved with Ben’s Friends over the years, and I am very excited to learn about you all and help in any way I can. We have some new members who have joined us recently, so I would like to provide some short introductions for them.
@jbo is a patient and recently retired teacher from Mississippi. She was diagnosed with a large occipital AVM in 1991 that was successfully resected, however, 33 years later her AVM has resurfaced. @jbo has now found Ben’s Friends looking for new information and resources related to AVM that have emerged since her initial diagnosis, and support in navigating this new normal.
@kindandhopeful1 is a patient joining us from Canada. They have had two cerebral aneurysms surgically clipped, in addition to surgical removal of brainstem AVM. They like to spend their time reading, baking, playing board and card games, and in nature! It seems like I share a lot of the same hobbies as @kindandhopeful1 and I am sure many members feel the same!
@EverlastingHills is a patient from the UK who has now lived in North Carolina for some time. @EverlastingHills had their AVM discovered after seeking help for migraines that they had been experiencing for about 15 years, and has now joined Ben’s Friends seeking information and support from the scariness and new life following this diagnosis that many of us can relate to.
@Caitlin is a patient joining us from Ontario, Canada who was diagnosed with Uterine AVM in January of 2024. She had her first embolization done but will be having a second embolization soon, and is now seeking support with our AVM community.
@AnnaRenee is a patient and retired teacher from Kentucky. Following two brain bleeds and a stroke, she was hospitalized with lots of complications. After spending two months in rehab, she is now at home with limited use of her left-sided limbs and ear.
@josie1 is a patient and management consultant from Singapore who is currently living in the UK. They were diagnosed in November of 2023 due to an incidental finding of an AVM. They have not been treated yet, but are looking into a gamma knife procedure as their neurosurgeon advised because of the eloquent location of the AVM. Maybe some of our members with experiences with gamma knife treatments can provide some advice and support as @josie1 navigates this situation.
Finally, we have @TeeEm. @TeeEm is a patient and avid yoga practitioner from Ontario, Canada! Over the years they have gone through many different diagnoses for their malformation ranging from hemangioma to venous-vascular malformation, to cystic lymphovenous malformation. They had several rounds of sclerotherapy and found a dramatic improvement, but now many years later, it has started to come back.
These are all of our new members, and I hope everyone will help me in warmly welcoming them! Once again please reach out to me or any of the other community moderators for any guidance or support you may require! Have a great rest of your week:)