Hello everyone, I also have an AVM disease and I wanted to share my experiences and experiences with you. I was born in 2003. When I was nine weeks in the womb, I had a C3 to C7 cervical spinal AV malformation in my neck. They found the first diagnosis when I was six months old on an MRI. My mother felt that I was always crying a lot. My first bleeding was when I was five years old, in 2008, with a severe headache and vomiting. Then I had an operation, the embolization lasted 6 hours, but there was a complication during the operation, so they had to operate again, but this time it was an open operation. I had to stay in the hospital for a while. After this bleeding, I started having problems with peeing, I still have difficulty holding it. My second bleeding was in 2011. Suddenly, a severe pain from my neck spread to both arms and I lost sensation. We went to the emergency hospital and they said it was a slight bleeding and we had to operate, embolization again. After this surgery, my sensation returned and I stayed in the hospital for a while. 2013 was a bad year because I had another bleed and there was severe right arm pain, I was clenching my teeth when the pain came, it was so severe. I went to the hospital in the evening, the hospital told me it was because you fell off the scooter, but I still stayed in the hospital and at midnight I lost my right side, I mean I have strength but no feeling and this problem still continues, I had cortisone treatment at that time, I did not have surgery. I had been doing everything with my right since I was born, but since 2013 I have become left-handed, I learned to eat, write and walk all over again, of course, but this time I did it all with my left. Despite this, I did not give up because I knew that God was with me for the doctors, even walking was a miracle. Until 2021, my avmem calmly stood. But a doctor came from France four times and they embolized me four times, he could not do it in the last surgery, it was too risky. 2021 I had another bleeding And this time it was very risky Yes, the others were also risky But this Surgery was a long time away It happened like this I was sitting on the couch and suddenly knives stuck in my back I couldn’t move I threw up We called the emergency ambulance they came I lost consciousness until we got to the hospital And I was transferred to a big hospital by helicopter And there they told my family If we don’t do the surgery He will bleed again but he could die during the surgery And I had to be awake for a nine-hour surgery, meaning without anesthesia. But thank God He protected me again as always And the surgery was successful. I had five surgeries that month And since the bleeding went to the brain, the brain fluid was damaged so a shunt was inserted That’s all my AVM story But let me tell you this Never give up because there is a God who protects us all. Of course, my experiences were not this much, I experienced other things too, for example, when I was little, my leg was broken and it was put in the wrong cast, they broke it again and had to operate. Of course, these experiences are small compared to this. I mean, if you add it up, I am 22 years old and have had 15 surgeries, but despite this, I studied at school and live my life with God, alhamdulillah. Of course, I experienced a lot at school, I mean, having friends and having an illness, it was hard, but thank God, I managed. My shopping mall is not a comfortable shopping mall and it is in a very risky place, so doctors are always searching for something, hopefully a cure will be found one day. Since I saw a page like this, I wanted to share my experiences with you and please I wonder if anyone has the same case like me or has a similar case?
Hey @Yaar23,
Welcome to Ben’s Friends.
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends. I don’t have an AVM, but rather another little nasty growing in my head for which I’ve required a few neurosurgeries (6 so far) to ‘try’ and manage it all. I too have a shunt to manage the fluid and intracranial pressures.
I must say in all of the time I have been here, I am yet to hear of 2 patients with exactly the same journey, nor exactly the same outcomes. For some it seems they can bounce back really well, for others there can be lingering issues. For me, each operation has hit me harder and harder. Some of the side effects haven’t just added up, but rather multiplied each other. It can be a real rollercoaster some days trying to manage around it all.
Similar to yourself, I’d had a few surgeries etc before the neuro side showed up (or was diagnosed) and looking back they seem fairly insignificant now compared to the neuro journey.
We are always here if you need,
Merl from the Modsupport Team
Hi Merl,
Thank you so much for your kind and thoughtful message. It really means a lot to me to know that I’m not alone on this journey. Hearing your story and your words of support gives me strength and hope.
I’m truly sorry to hear about everything you’ve been through. You are incredibly strong, and I admire your courage. I wish you all the best and hope for better and brighter days ahead for you.
Take care, and thank you again for being there.
Warm regards,
Yaar23
Hey @Yaar23
And that’s exactly why we are here. It is isolating, often others don’t understand. Some people think ‘they operate, you recover, and life goes back to normal’, well, that’s the way it’s supposed to happen. But what happens when it doesn’t work that way? I was given the normal 6-8week recovery timeline… …well, I’m at 12yrs since my last and I’m still battling to find a ‘normal’ some days. Having others here with some understanding has been a blessing, people with a lived experience and not just a university textbook/qualification.
Merl from the Modsupport Team
Hi Yaar23, thank you for sharing your story. 
You have been through a lot at a young age, and are so mature. I’m really inspired not only by your strength and resilience but also by your really well spoken words! I can tell you are a very thoughtful and kind person. We are all here for you and help each other through sharing other our unique experiences. Thank you for sharing your story, so far, and please keep us posted on your journey!
Hi Gumlan
Thank you so much for your kind words and encouragement.
It truly means a lot to feel understood and supported, especially from people who have their own journeys and experiences.
I really appreciate your thoughtful message — it gave me strength.
I’ll definitely keep you posted as my journey continues.
Thanks again for being here! 
Hello Yaar23, So Sorry to hear about all your problems with being the lucky recipient of a cervical AVM, It is a tough road, but be strong and live your life the best you can! My spouse has a Cervical at C5-C-6 diagnosis at 15yrs old ,she became a quadriplegic at that age but fought back to walk with cane for for 20 years, she is 56 now and has been able to do so much in her life, currently it has grown into the 2 vertebrae and can not be operated on again, we think? We just try not to thing about it. It goes to show that all though it may look like it’s not possible to live a normal life, my wife’s journey shows you can, continue to be strong and best wishes to you .
Ken
Hi Ken,
Thank you so much for your heartfelt message and for sharing your wife’s story with me.
I’m truly sorry for everything she has been through — it must have been incredibly difficult for both of you.
Her strength and determination are truly inspiring, and it gives me hope to know that despite everything, she has been able to live a full life.
Your words meant a lot to me. I will try to stay strong, just like she did.
Please send her my warmest regards and best wishes.
Thank you again for your kindness.
– Yaar23
Hi Yaar23.
So sorry to hear about everything you have been through. Life can be a little * sometimes but I’m really glad you found this forum. Although we’re all affected slightly differently by AVM, we are of course linked by dint of suffering from this wretched thing. My own AVM is in my right cerebellum and I initially only found out about it when it caused Hydrocephalus at the age of 14. I’d been having major headaches with vomiting for a couple of years then and had an emergency operation to fit a VP Shunt. This has blocked 4 times so I have needed a few revisions. But hey, I’m 52 now so it could have been an awful lot worse. My AVM is inoperable due to its position and in 2015 it caused a stroke mimic. But until then I hadn’t had much of an issue. Then in Dec 2024 I had a suspected minor bleed. I have recovered really well though without much residual difficulty. As others have said, we’re all here to support each other. Please do make use of us if you think we can help or you just want a chat.
Lulu x
Hi Lulu,
Thank you so much for taking the time to share your story with me. What you’ve been through is truly difficult, but your strength and the way you’ve kept going despite everything really touched and inspired me.
Knowing that there are kind and supportive people like you here makes me feel less alone and much more hopeful. Your words meant a lot to me, and I really appreciate your support.
Sending you my warmest wishes,
– Yaar23