Hi everyone and happy late New Year! Our community has been very active since the beginning of 2024. We have had many new members join over the past little while that could use some introductions.
@dageris is from Texas, US, and has a son diagnosed with an AVM back in July. After some difficulties with insurance, which many of our members have experienced, he underwent surgery in Houston, US, and is now recovering with some positive outcomes!
@lj4y is from NYC, US, and has been experiencing many AVM-like symptoms for the past few years before getting a diagnosis of an AVM likely causing the symptoms. Ij4y is another spinal AVM member and would probably benefit from the advice and experiences of some of our current members. Interestingly, Ij4y is in a therapeutic horse riding program.
@fidopuppy is from Wisconsin, US, and had an AVM back in 1978 that was rerouted using a tube in her groin. fidopuppy’s AVM was discovered by their 3 y/o daughter when she heard a whooshing sound in her head.
@iram2 is from California, US, and had been going through a maze before finally figuring out she had an AVM in her pelvic/uterine area. She is still attempting to get an appointment with a clinic and would benefit from the advice of other members.
@Dania is from RS, Brazil. She is a relative of a brother and sister who have both experienced hemorrhagic strokes due to AVMs. Dania is here to understand AVMs and hopefully come away with some better insight into them.
@Fish4lyn is also from California, US. She experienced an AVM burst that resulted in a brain bleed which was treated with an embolization.
@tinkerBELL23 is from Pennsylvania, US. Tinkerbell23’s daughter had an AVM rupture in November and thankfully survived. Her daughter has been recovering ever since and she could use the advice and experiences from our other caregivers and relatives in the community.
@2018 is from California, US. 2018 had a coincidental discovery of left frontal lobe AVM when they went to get an MRI scan for black mold exposure. 2018 has had a great recovery from their craniotomy and has not experienced any of the common side effects.
@Jamiee is from Florida, US, and is a new intern with Ben’s Friends! She is a rare disease patient herself with a different condition called EDS. You will see her hovering around the conversations and she hopes that she can get a better understanding of how to help our community!
@Bikermike22 is from Sutton Coldfield, UK. BikerMike has been through a rollercoaster of medical scares over the past 10 years, first experiencing a brain hemorrhage and now being recently diagnosed with an AVM. BikerMike also has some cool hobbies and interests that might catch some people’s attention, like motorcycles, tropical fish, french bulldogs, and drones!
@Munbat is from Connecticut, US, and was diagnosed with an AVM almost one year ago today. Munbat experienced tingling in his legs before he lost the ability to walk and was rushed to have surgery not long after being diagnosed.
Some of our other new members include @PopsAVM and @RobO. PopsAVM has already been sharing her story and received a lot of advice and encouragement from our more experienced members. RobO has shared his story as well involving his young son. Many of us are aware that his son has unfortunately passed on and our condolences have been sent his way. I hope that maybe some of our other caregivers and relatives who experienced similar events would be able to reach out and support Rob in this time of need.
For every one new, please feel free to introduce yourselves, start your own topic, or respond to other topics. This is a space for you to lean on others and express the challenges you are facing. You will be surprised to find out how useful and comforting the experiences of others will be as they support you.
Have a great week everyone!