Welcome New Members! -- Late April

Hello everyone, I hope you are all doing well. I would like to take some time to welcome and introduce our new members.

@Patricia is from Escondido, U.S. and was diagnosed with a cerebellum AVM in 2011 following a rupture. @Patricia is now getting radiation therapy as treatment.

@Jaana is from Helenski, Finland and has a daughter with an AVM. @Jaana’s daughter experienced a massive brain bleed and two strokes following the worst headache of her life. After surgery and a craniectomy, her left side was left paralyzed. Her daughter fought hard, spent 6 months in a rehabilitation center, then managed to walk again and finish high school. @Jaana is fighting hard alongside her daughter to help her get her life back.

@LCROSWELL919 is from Virginia, U.S. and is the parent of a son with an inoperable AVM in the left frontal lobe. He is awaiting treatment. I hope our community is able to provide support to @LCROSWELL919 during this challenging time.

@hellus is from Bergen, Norway and was diagnosed following a rupture, a few days after turning 25. Unfortunately @hellus was not given an MRI or CT Scan during the year prior while struggling with a bad headache, resulting in diagnosis post rupture. @hellus has received Gamma Knife as treatment but still struggles with fatigue after aneurysm, and is just trying to get back on their feet.

@Lo523 is from Illinois, U.S. and has a son with AVM, diagnosed following a rupture in 2020. He was admitted to the ICU with high intracranial pressure and put on life support until the pressure decreased. He underwent brain surgery, a long stay in the ICU, followed by an observation unit and an inpatient rehabilitation facility for six months. After being discharged home, he was admitted for vein clipping shortly after. He had a stroke on the right side which has affected his short term memory, which is severe. He is now able to get around with the assistance of a walker and has continued physical therapy. I hope @Lo523 and their son are able to find comfort and support through AVM survivors during his extensive journey.

@CarloM is from Emilia Romagna, Italy and has an extremity AVM on the left foot sole. @CarloM has undergone embolization as treatment. @CarloM also works in the film industry!

@nazalmac is from Ankara, Türkiye and was diagnosed with a brain AVM. @nazalmac has undergone surgery and has post surgery questions.

@kacylynn is from Oklahoma, U.S. and has a right hand, high flow AVM. @kacylynn is looking for help as her AVM is getting worse! I hope @kacylynn is able to receive adequate help and support within AVM Survivors.

@Bowman is from Georgia, U.S. After experiencing a seizure back in October 2022, they fell, hit their head, and broke their jaw. @Bowman doesn’t remember anything until arriving at the hospital where doctors informed them that they had a broken jaw and a brain bleed visible on their scans. They were then airlifted to Savannah Memorial, where they underwent embolization and had their jaw wired shut, and spent two weeks in the ICU. In January of 2023, they received Gamma Knife Radiosurgery. Fortunately, @Bowman was told in October of 2023 that their AVM started to shrink, and in April received more scans and the great news that their AVM was obliterated! @Bowman also has a success story for sobriety, reaching two and a half years at the time of rupture, and remaining clean and sober to this day!

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at this moment I have reached a new location on a new movie set, I will test myself one month after the first embolization using coils. In exactly one month I will have a check-up with the surgeon who operated on me. I have no pain with the compression sock but my foot remains very swollen. Thanks to this group, however, I learned of the name of Dr. Yakes and his practices of embolization with absolute ethanol. It seem to be decisive. maybe I’ll find someone expert in Italy. I attach a link that I found interesting. maybe you have feedback. A strong grip from Italy, we must try not to lose hope to face these difficult moments with the right spirit.

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Thank you so much for sharing more of your journey with us! I hope all goes well and I’m so glad to hear the group has provided you with helpful information. You are absolutely right, hope is key.