Hello everyone! I hope you are all having a wonderful month so far. I am excited to see all of the new activity and discussions between members over the last month. I would like to take some time to introduce and welcome our new members.
@AlisonO is from Northern California, U.S. and has shared some information on her daughter with an inoperable AVM, who has experienced her first ever tonic-clonic seizure. I believe that our AVM members can provide support and insight to Alison as she navigates this difficult situation.
@Kris is from California, U.S. and has experienced a stroke and congestive heart failure as a result of their undiagnosed PAVM. Due to these complications, Kris has dedicated time towards helping others in similar situations as Kris is also a leader of a local stroke and caregiver support group. Kris would appreciate any ideas for meetings that may be of benefit to the group.
@BethD is from Virginia, U.S. and has shared some personal experiences with her son, who suffered from a sudden AVM rupture and had a successful AVM resection in September, but still struggles with complications. Our group members may be able to provide valuable support to Beth in coping with issues like memory loss, as Beth is curious to hear about the situations and outcomes of others.
@Ayam is from Florida, U.S. and had been experiencing sudden, debilitating AVM symptoms, but these symptoms were initially misdiagnosed as migraines. Ayam was later diagnosed via CT after a bleed, and a ruptured 2.2 cm AVM was found. They underwent an embolization procedure and a gamma knife procedure. It is often that these procedures and their risks and benefits are discussed extensively within the community, hopefully we can provide Ayam with a comfortable and informative space as they wait to see what the future brings.
@Simba900 is from the Newfoundland and Labrador area of Canada. Simba900 has a 24 year old son with an AVM, and he has experienced loss in his hands, arms, and legs. The complications he experiences hit home for much of the AVM community, and I hope Simba900 is able to gain some valuable insight from other members on coping with these challenges.
@jaideep is from Kolkata, India and experienced a subarachnoid hemorrhage in the brain and was treated with an embolization.
@hunkydory is from Tokyo, Japan and has a spouse with a recently diagnosed extracranial AVM on their face. Our AVM members are fantastic at helping loved ones cope and gain a better understanding of life with AVM. I am glad hunkydory has joined us and I hope they are able to receive abundant support from the community during this challenging journey.
@Chickenmama is from Texas, U.S. and was diagnosed with a PAVM and advised to monitor it yearly. She continues to monitor the PAVM as her present treatment and expresses interest in learning more about additional PAVM treatments.
@davis3414 is from Michigan, U.S. and was diagnosed with AVM following sudden and severe complications at age 6. Davis3414 eventually underwent the gamma knife procedure and they have since received confirmation that the AVM was gone. Davis3414 continues to experience complications, however, they display astounding perseverance in attending college, becoming a certified union welder, and now sharing a beautiful life with family!
@sudek is from Zilina, Slovakia and has experienced malformations with low flow to the larynx, nasopharynx, uvula, and eardrum. During a recent acute embolization, the radiologist found the dominant supply of their lesion from the artery. Sudek has been treated via sclerotherapy and embolization.