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AVM Survivors Network

Hey, my name is Ben!

Hey everyone, it is only lately I began remembering what happened to me when I was eight. I would go years without remembering the rupture, but due to my sister having some form of ptsd from it (and probably myself as well), I kind of just want to type it out. It ruptured (or bubbles and ruptured later) randomly, I was on my way to the pool. It felt essentially like vertigo coupled with me losing basic motor functions. My parents were getting ready to go furniture shopping as we had just moved to a new town/house. I recall telling my mother that i didn’t feel good and that something was wrong. So I, thinking that it was just a headache normal people have, walked to my room, albeit using anything I could find as a brace as my symptoms were worsening. I recall the symptoms turning very severe as I entered my room. The headache was intense, I was nauseous, and my eyesight was very sensitive to light. I remember thinking, even as a young kid, that I was potentially dying. For reasons I can’t remember I climbed to the top bunk of my bed, proceeded to throw my guts up, and began a series of several seizures with no one aware they were occurring. I would regain consciousness for maybe 2-3 minutes, wondering why I was so sweaty and why there was vomit everywhere, and start seizing again (I think, my memory is blacked out to this day). Apparently my sister (10 years old at the time) could hear me screaming bloody murder the entire time and saw me seizing. Not knowing what was happening she called my parents telling them I needed to go to the hospital. She told them she was scared. She had looked up the symptoms and was fairly sure that I was having brain issues, to which she relayed to my parents over the phone. My parents told her do not call 911, I was just sick, and if she did they would beat her ass when they got home. Again I had no idea any of this occurred, I just know that I was in tremendous pain. Over the course of three days, with varying episodes of pain (the pain was always there though) I stayed in my bed. My parents did not take me to a hospital. I couldn’t walk, my eyesight was skewed, and my sense of smell really sensitive. When conscious I was in severe pain, the best description I could give is getting hit with a hammer with every heartbeat. Every waking moment was torturous. The only time I wasn’t in pain was the few seconds after I would regain consciousness, I wouldn’t feel any pain and I would think oh thank god im better. But sure enough the pain would come back, and I would start weeping. I cannot stress enough how bad it was. I was constantly throwing up. At one point, thinking I was dehydrated, my parents made me chug like 4 Gatorade bottles, which I promptly threw up. My mom kept shoveling blood thinners down my throat, thinking they would help my headache, when in hindsight they probably made it worse. On the third day we went to the ER. The CT scan showed the bleed and I was rushed to the hospital and put into the ICU. There I would have several severe episodes of bleeding, moments I do not recall. Apparently the pressure was so great that I would seize and at one point (apparently, again I do not remember) I told the doctors to just kill me. The only thing that I remember of these episodes was waking up, naked, and covered in sweat wondering what happened. They were close to performing surgery, but the location of the AVM was inoperable. I know this because some intern came in and gave me, an eight year old kid, my prognosis. Keep in mind At the time I had zero idea what was going on. She basically said “ya man, you could die”. If they did surgery, I would either never walk again, or die. They gave me a drip of morphine, which was actually amazing. Long story short, we contacted a neurosurgeon in Phoenix who refused to do surgery, so I had a gamma knife. Four years later I’m cleared. I’m having trouble forgiving my parents for not taking me to the hospital sooner. I was a child in an amount of pain that no one should go through for three days. These are the same people that tried to send my bipolar sister to an exorcist, but still. I remember the doctors at the hospital questioned my parents on way the hell they didn’t take me sooner, but I guess my dad just flipped out on them.

I have a few questions for others with stories similar to mine:

  1. Do you have brain damage? If the doctors did say that I did my parents would not tell me, thinking god will heal my brain, or that i being a kid should not know. I have issues with memory and concentration, fatigue, amongst others.
  2. How do you remember the pain? All I can remember is how grueling every waking moment at home was.
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Also, a funny detail: the entire time I thought I just had a headache. I remember thinking “wow, Headaches really suck”.

First off, welcome to our group! Wow, tat is quite the “adventure” you’re describing in getting to the hospital. I went a few days late then I should have, didn’t exactly listen to my wife, a nurse, and go to the hospital. When I did go ad get a CT scan, things started to happen, which I don’t remember, spent 4 mights in the neuro step down ward ad then home to recover. I had gamma knife and 32 months later got the all clear.

I have what the neurosurgeon referred to as a “void”, like a little hole in my brain where the clot formed around the AVM…so I guess that is damage. I have a few lingering things that most don’t recognize, the memory is not what it once was. I find I get fatigued quicker, not doing physical things but dealing with interpersonal, work/staff type things that require a lot of thinking and interaction.

The pain was off the charts, I was taking tylenol and advil and it wasn’t touching it. I’m glad I am missing several days! Take Care, John.

Hi Ben,

Wow, that is a lot to go through at eight years old.
When my AVM ruptured, I also remember telling my mother that something was wrong, when the sudden headache happened. I also remember my eyes were so sensitive to the light, and I began feeling so isolated from the world. When I couldn’t take the headache anymore, I had to sit down on the side of the curb, where I proceeded to vomit, until I was sedated and rushed into surgery.
To answer your questions: Yes I had/have brain damage from the rupture. I went to rehab to relearn many things (walking, sitting, speaking properly) and rewire my brain (since damaged neurons in the brain don’t regenerate). I also have ongoing issues with pain and fatigue, among other things. I do remember the pain, it was debilitating. After surgery they were giving me hydro-morphine for days and I remember feeling like it didn’t help all that much, until it started to wear off every few hours. For me the best way I described it was, someone had bashed the back of my head with a bowling ball.

All the best,
Ella

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Ben,

Can I say, I think you’ve been through an astounding trial and somehow made it out the other side! I think it should be safe for me to say that you’ve done life’s worst thing, aged eight. Honestly. Wow! PTSD is probably about right: if you feel the need for proper support for that, I’d definitely look out how you can get support near you.

I’ve not had a bleed, as my AVM was discovered because I could hear it, and I was more than 40 years older than you when I found it. However, there are plenty of people here who’ve been through some of what you describe.

Hats off to you, young man! Very best wishes,

Richard

When you mentioned time lost, I have no memory of my first 14 days after my rupture. I would love to know what I said or all that was said.

i remember when mine popped i thought it was a migraine and kept going about my day. i tried everything to make it stop and it wouldnt, i went to the hospital twice before they did a ct scan on me. once i finally was admitted to the hospital it took another day for the pain to really start. but once it did it never went away, i was given dilaudid for the pain. but theres days i dont remember, i do remember asking the doctors to drill a hole in my skull to ease the pain.

as far as brain damage i dont have any.

Ben:

Welcome to the group! You may have had a hard time getting your parents to listen to you, but we are a group of avid listeners, advisor’s, and encouragers that will lend support to you when you need it. We all have a similar and/or familiar story to tell. I remember the pain of the rupture being horrific. I knew it was a brain thing because it felt like my head was being torn off my shoulders. I’m a lot older than you and it’s been 5+ years since my rupture and Gamma Knife Radiation and I still get tired easy, I’m often off-balance, I can’t be in the dark, and loud noises make me crazy. My AVM is much smaller now but a small percentage still remains in my brain, so you could say that I’m still healing. I lost a lot after the AVM ruptured, but I gained a lot in return. I’ve learned patience. I’ve learned to listen. I’ve learned what real love is and isn’t. I’ve learned to ask for help (that was a hard one) when necessary, and I’ve learned that I’m not as perfect as I thought I was! Take it slow and by all means get a second opinion. The medicine that I take for my AVM is called P&P (Prayer & Patience). Take a sip! Wishing you the all the best.

Sharon D…

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Ben! That was awfully painful to read! I am firstly so glad the AVM is cleared and you are in a better place. Especially at such a young age, I cannot imagine how those 3 days would have been like for you.

Luckily where I stand today, my AVM has never bled and I am 2 years post gamma knife with an AVM still 60% there… :frowning_face:… it’s a long journey for sure. Being 19 now, and seeing ‘better’ days, although I still have never experienced a headache/m free day… But I vividly remember how immediately post-gamma-knife, I was in tremendous amounts of pain… that pain stole a lot from me being a 17-year-old… college days, mental health, university dreams… and the pain was exactly like a ‘hammer with every heartbeat’… I think back and although I don’t know whether these memories are now just left for the past and will never return but the pain was as such that it makes me even nauseous even thinking about it now.

So you are brave! and what your parents did, is a thing of the past and I am sure they have now learnt the importance of checking new symptoms with a doctor. I am also sure that they are VERY happy to see you alive and healthy!!!

I am so happy to see you join the community though, and this is what we do, we share our pain together!
Here’s to even brighter and happier days ahead! :raised_hands:

Roshan

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