Welcome New Members! -- late Mar

Hello and happy April! I hope everyone is doing well and receiving ample support from one another. I would like to take some time to welcome and introduce our new members.

@YuliM is a Columbian AVM patient living in New South Wales, Australia. @YuliM has a grade 5 left, occipital AVM with a high likelihood of hemorrhage, Chiari Malformation, and may have radiosurgery as an approach to treatment.

@synchro is from Dublin, Ireland. @synchro’s AVM was unexpectedly diagnosed following a rupture. The AVM is approximately 3 cm, on boarder of the occipital and parietal lobe. @synchro is working closely alongside a surgeon and has been recommended for radiotherapy. @synchro also had their first child five months ago!

@GlueGal is from Ohio, U.S. and was diagnosed with a grade 3 left, temporoparietal dural AVM following a rupture. Prior to the rupture, she had experienced symptoms such as frequent headaches and face tingling. @GlueGal has had two embolizations, a stroke, and expected to start radiation. She has many pets and has been trying to convince her spouse to let her get chickens!

@raf1 is from Southern California, U.S. and is a relative of an AVM patient. Their 77 year old dad was diagnosed with a brain AVM and AFIB. He does not want surgery but is considering Cyberknife or monitoring as treatment. @raf1 wonders if a 77 year old should have radiation treatment for a brain AVM. I am of the hopes that our members can be of assistance to @raf1 in sharing their personal experiences and knowledge to help them find some answers.

@Khovergirl is from Wisconsin, U.S. She is a patient with a foot AVM. 30 years ago, doctors said there was nothing they could do but now it is more painful than normal.

@MKMO is from the United Kingdom. They have a large cerebellum AVM, discovered after finding the CM AVM causing mutation. @MKMO has had an angiogram, and is waiting to discuss potential treatment. Although the AVM is large and deep, they may want to treat the aneurysms that were found.

@LSCram is from Florida, United States. After suffering a stroke and associated seizure, then receiving a life-saving second opinion, they were diagnosed with a dural arteriovenous fistula with cortical venous drainage. @LSCram has undergone endovascular embolization as treatment.

@HappyWho is from Missouri, United States. She was originally diagnosed with AVM 17 years ago, and after a recent doctor’s appointment for an enlarged bump on her scalp, the doctor believed it to be AVM again. The bump now has bumps and ridges and has progressed forward. @HappyWho experiences headaches, constant pressure behind the left eye, and occasional blurry vision and flashing lights. She wonders how urgent treatment is for a rapidly growing AVM and where she might find a qualified specialist within driving distance of her home. I hope @HappyWho is able to find support and answers within the community and receive some potential recommendations from other members in her area.

@Kygirl is from Kentucky, United States. She was recently diagnosed following an MRI for dizziness and is still under review for treatment.

@Jsmith92 is from New York, United States. In April 2021, she was rushed to the emergency room after experiencing numbness in the left side of her body. An MRI and CT revealed that she had a gold ball sized AVM on the left side of her brain. Since then, she has done five embolizations and angiograms, all of which were successful. On April 2nd, she received Gamma Knife surgery. I hope she is having a speedy recovery and is able to find support within the community.

@Balangkas is from Pennsylvania, United States. They were diagnosed with their first AVM in 2003, which was surgically removed from the occipital lobe. They were just diagnosed with another AVM in the insular cortex extending into the deep white matter of the left frontal operculum.

@RubyRose is from Texas, United States. Her 35 year old son had a brain stem AVM rupture a year and a half ago. The doctor has decided to wait and see, as he believes it’s too risky to treat. Since her sons rupture, he has developed a deep, hoarse cough that seems to be worsening. @RubyRose wonders if anyone else has experienced problems with coughing after a brain stem AVM.

@DeniseV is from Manchester, United Kingdom. After several complications, following what was originally thought to be knee problems, she was given an MRI on her lower back. After the MRI came back with indication of a potential AV fistula, she was given a full spine MRI with contrast and an angiogram, both confirming an AVM. She is experiencing a bit of shock during this process of trying to accept diagnosis and has sought out AVM Survivors to learn more about different experiences and outcomes. I know many of the members have experienced significant emotions, such as shock and anxiety, post diagnosis. I hope @DeniseV is able to find both knowledge and comfort within the community.

@BrendanLeftFrontal is from California, United States. He was diagnosed with an unruptured grade V left frontal lobe AVM late last year. The AVM is deemed inoperable and he is currently trying to decide what, if any, treatment to proceed with. He is looking for support and feedback, as his main concerns surround the negative experiences he’s heard about Gamma Knife side effects on high grade AVMs in similar regions.

@LynnyBelly is from California, United States. They are the caregiver to a patient that has suffered from an intracerebral hemorrhage of AVM with subsequent resection of AVM and damaged areas at age 9. The patient has undergone multiple treatments and medications since and has had several critical areas of the brain removed. The patient struggles with complications, such as: memory, cognition, executive function, emotional control, frustration, organizing, planning and more. @LynnyBelly has expressed a shared frustration to many others within the community, of finding health care providers willing to learn about and understand the complexities of a brain injury.


What an incredible number of new members! Welcome everyone!