I had a seizure 10 days ago because of an AVM which have not bleed. And i am 30 years old. Still trying to find where to go for a cure. There are not many places doing gamma knife in my country.
My AVM appeared on Ocober 31st, 2007 when I was 7. It was misdiagnosed as everything from a bruise to a cyst until April 2009.
Hi everyone my Name is Luza My AVM was found after a car crash in 2011ā¦ I was 46 years old. I was driving to work
Hi Michael
I found out at 6 years of age. It was too risky to take action. Now being almost 30, I have to make a decision because itās āacting outā a lot. So Iāve been through a lot of up and downs with physical and emotional well-being trying to maintain this. In 2010, I felt more stable emotionally, meaning not living in fear and accepting the reality. It took long enough. Now, Iām bearing the pains and looking into actions to be taken. Iāve been using Tibetan medicine under the instruction of my doctor in the meantime. That has helped tremendously in maintaining blood flow. More than you asked but, here it is!
No im prob the oldest. Mine was June 28, 2021. I was 66. They tried to say my blood pressure was too high, which it was not. They had me on 3 blood pressure meds in the hospital. They couldnāt get it to come back up almost. They also assumed I was an alcoholic at first, which I sure am not. Itās because Iām older than most, obviously, to have a bleed, which did lead to a stroke. Getting better day by dayā¦
Got diagnosed when I was 18, canāt remember exactly what month but it would have been some time in 2019.
18 years old. 6/6/2021
Our daughterās was diagnosed in utero. this was in 2008 and was the first time an AVM had been found in uterine in Israel! She was delivered the next day via c/section.
Has a craniotomy at 4 mos. AVM returned when she was around 6. Since then sheās been under observation.
Sheāll be turning 14 next month!
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Apparently I was born with it, had extensive bleeding from my left ear(same side as my AVM) - there wasnāt much to diagnose a AVM back in Russia in 1980
Officially 1st seen in a CT when I was 14 - but, never thought twice about it until I hemorrhaged in 2020
Hi. My son got diagnosed (no symptoms just an accidental find) in August 2021 at age 20. Australian vs USA technology is huge! I am incredibly grateful he is at University in the USA with medical coverage. He had an LPS craniotomy (not sure they even have it in Australia) in December and walked out of the hospital in less than 2 days. He had one massive headache post surgery a month later (after going from -12C outside to a warm indoor room). He was back at work and University in a month, playing soccer (no contact, just practice) 5 weeks post and lifting lite weights 7 weeks post surgery. As long as his bp stays below 140 the doctors said he could gradually return to sport.
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Mine just happened this year February 1 2022
Welcome! Itād be great if you would tell us a bit about how you are and your story: we can help you with stuff and likely what you say will help others. Ideally, start a new thread using the blue + button on the home page.
I was 52 when I was blindsided, I didnāt now I had an AVM. My AVM ruptured while I was sitting in my den waiting for the Dallas Cowboys to kickoff. I didnāt know what was wrong other than my whole left side was paralyzed, so we figured I had a strokeā¦.which I did, but the stroke was due to the AVM rupture. My local hospital figured out that night that I had an AVM, Neurosurgeon talked to my wife and myself about what he could do here or he could HaloFlight me to Methodist Hospital in San Antonio Tx. where a neurosurgeon there specialized in removing AVMs, which is what we did. 2 things happened happened the day of stroke which saved me (besides the hand of God) One was I arrived at the hospital in the āmagic hourā to receive life saving drugs and the second was that the vessels in my AVM (located on the right front lobe),were so small that when my brain started swelling it actually stopped the bleeding. Craniotomy was a week later to remove the AVM. I spent 3 weeks in the NICU, then I was transferred to RIOSA (Rehabilitation Institute Of San Antonio) and spent more or less 2 1/2 months there. RIOA is known for treating patients with TBI. I left RIOSA without the use of my left leg, walking with a manual AFO and a side walkerā¦ continue to workout in an effort to stay out of a wheelchair, itās been eleven years now. I had regained the use of my left arm, but still have left side weaknessā¦ I got carried away, gave you more than you asked. I actually forgot what the question was I just got lost in my story which I left quite a bit out. Good luck, Chip
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I found out my daughter had unruptured AVM in 2018 and she was 3 years old.
She had an craniotomy and successfully removed AVM in 2019. She is 6 years old now
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I was 18 (1st bleed), 19 (in hospital from first bleed still), 24 I think, and then 39 when the stroke occurred. Get checked and stay on top of it! Blessings as you continue!
My family first noticed that there was something āwrongā when I was 4, and took two years to get diagnosed in 1999.
I supposed to have it since birth, but appears the first time when I was 51. I am 62 now.
Discovered and diagnosed at 23, removal surgery at 24, I will be 59 on March 4th, so 35+ years,