Happy March, everyone! I am excited to see all of the new activity and discussions between members. I would like to take some time to welcome and introduce our new members.
@Katje is from Colorado, U.S. They have AVM, and found out through an MRA that they have a 100% blockage in their carotid artery.
@Jenny24 is from Bristol, U.K. and is the relative of an AVM patient. Her husband was diagnosed with a large AVM at 11 and has experienced seizures due to the AVM. They are currently considering potential treatment via staged gamma knife, as they were previously advised against treatment due to the high risks. I hope the community is able to shine some light on the possible risks and benefits from the patient perspective.
@Tessawirtz is from Wisconsin, U.S. and is the relative of an AVM patient. Her long term boyfriend was diagnosed with a ruptured cerebellum AVM via angiogram. Her boyfriend has been in the ICU, showing some improvement, but still lacking in skills such as speech, decision making, emotions, and motor skills. Tessawirts is asking for help and guidance during this situation. I am hopeful that both patients and relatives can provide her with support during such a challenging time.
@mikenj is from New Jersey, U.S. and is the relative of an AVM patient. The AVM is said to be small and in a good spot. No intervention has been performed, but there was a suggestion of angiogram with gamma knife. Hopefully AVM Survivors can help give mikenj an in-depth patient perspective on their experiences.
@kitty1-2 is from Massachusetts, U.S. They have gone through an extensive journey with their AVM, undergoing two brain surgeries, at least two brain embolizations, gamma knife radiosurgery, and seven brain aneurysms. kitty1-2 still experiences some chronic, and disturbing side effects but has shown incredible strength during their medical saga.
@Survivor1209 is from Connecticut, U.S. and a former Law Enforcement Official. They are a patient, diagnosed with AVM and they have experienced a bleed. Survivor1209 has engaged in occupational therapy, physical therapy, speech therapy, extensively cognitive retraining aquatic, therapeutic horseback riding, and sail boating. They hope their story encourages someone!
@BrainAVM is from the Midwest of the U.S. and is a relative of their husband with a right occipito parietal AVM, initially having surgery in 1994. Unfortunately, in 2018 he experienced complications with a 30 minute loss of short term memory. Since then, episodes such as these have continued and been diagnosed as seizures. He has been prescribed increasing doses of levetiracetam. BrainAVM is wondering if anyone else has experienced similar, what treatment has been implemented, and what physicians have done to reduce future memory loss.
@Tashie is from Victoria, Melbourne, Australia. Their mother experienced a sudden ruptured AVM at 72 years old. She spent 31 days in the ICU, had surgical removal on the 43rd day, and has been in the hospital over 60 days. She is described as a strong, classy, family-oriented woman, previously working as a nurse until age 68, married 52 years, and loves novels and a wide array of music. I hope the AVM community is able to support Tahoe during this difficult event, providing support for their beloved mother and family.
@SCALLYWAGON is from Perth, Australia. They are a relative of an AVM patient, with an untreatable 7cm AVM. The patient is currently on paracetamol and anti-seizure medication.
@Jana1 is from ZlĂn, Czech. Their daughter was recently diagnosed with an AVM of the lip. She has undergone several laser treatments and one plastic lip surgery. The AVM has continued to grow and appears inside the lip. Jana1 is looking for new treatment options and additional information on AVM. Due to the vast experiences within the group, I believe Jana1 will find helpful advice and shared experiences from other group members.
@augustgardens is from New York, U.S. and experienced a grand mal seizure at the beginning of this year. At the ER, they were diagnosed with a 3-4 cm AVM near their parieto-occipital lobe. They are currently considering treatment via staged micro embolization followed by radiosurgery, and have their first embolization on March 13.
@Koala is from Somerset, U.K., diagnosed just this month with a Grade 1 right frontal lobe AVM. Their AVM was diagnosed by chance via an MRI performed for other reasons.
@Venolia is from Florida, U.S. and experienced a hemorrhagic stroke, resulting in the discovery of their AVM. Embolization didn’t work, then a radiation procedure did. A year later, they experienced swelling on the brain and stroke symptoms. They are now taking recovery one day at a time.
@jenna is from Nova Scotia, Canada. She initially started experiencing 30 migraine-aura episodes. A CAT scan/MRI then discovered a small, unruptured AVM. She has continued to experience repeated, short episodes over the years, however, she recently experienced a long episode resulting in hospitalization. She is presently trying to get a better diagnosis and look at potential treatment options, as Keppra is negatively interfering with her activities of daily living. Jenna is interested in understanding medications and what might be more effective and manageable in her situation. With many patients in the community having experiences with medications and various other treatments, I am hopeful that Jenna may find some helpful information.
@megan_8 is from Tennessee, U.S. She had her AVM seven years ago, spending over three months in the hospital. Megan_8 is big on celebrating any progress, as well as mental and physical health! I believe all of these to be extremely important in dealing with the challenges of an AVM diagnosis and treatment.
@SunshineSyndrome is from California, U.S. and the relative of an AVM patient. The patient experienced a ruptured AVM at 23 after multiple years of migraines and other symptoms. They had surgery to help the bleed but unfortunately experienced another bleed within a year. With many members experiencing repeated bleeds, I hope the AVM community is able to provide support to the patient and relative.