What were you doing in the minutes that led up to your AVM rupture?

Steven Leary said:

I was at my oldest sons baseball JV doubleheader. I was perfectly fine the first game, during the second game I couldn’t follow the ball. It could have been a home run, foul ball, strike, I couldn’t tell. My wife kept telling me that something was wrong but I would tell her that the sun was causing me to not follow the ball and that I was fine. After the game I waited for my son to take him home with me. While I was waiting for him I started to feel like everything was starting to slow down and kind of getting darker. We got in the truck and I drove home which is about 10 miles away. We really didn’t talk much which we usually do after a game but that was probably due to me starting to phase out. Once we got home I called the father of a kid I was going to be coaching during the summer and asked him for his e-mail address. I couldn’t understand what he said and after the third time I told him OK and told my wife that she was going to have to call him because I couldn’t understand a word he said. My wife knew that something was definitly wrong and she has a medical background and started looking stuff up. She kept telling me that I was have syptoms of an anyersum. I told she was crazy and I went and sat down. They gave me some juice and a sandwich and called my stepmom who is a nurse. By the time she got there I was really knew something was wrong. She asked me what time it is and I replied “I don’t f***** know and I don’t f***** care” and I never curse in front of my sons. Then she asked me what day is it and I replied “Randy” who is a good friend of mine. She asked me if I would go to the hospital and I agreed and stood up and started walking to the garage. About half way there I blacked out and still made it to the garage where my stepmom and youngest son kicked out my knees and put me on the floor. My wife had already called the ambulance because she knew there was know way they would have time to get me to the hospital. I had a full blown seizure in front of my wife and sons. They thought they were watching me die. Worst day of my life.

Our family had just sat down at a resturant and were looking at the menu when my daughter started complaining of the headache. A couple minutes later she was screaming. Sedentary. And I can’t even drive by that resturant without getting queasy - too bad it is a popular chain.

I think your theory is valid, though. Do docs restrict activity for people with known AVMs? My daughter’s was removed before we left the hospital from her bleed.

I was laying in bed reading a book, then i felt like a bomb was exploding in my head.

Rebecca,

From what I’ve read, a lot of doctors do restrict activities (at least to some extent) for people with AVMs. However, the more responses I get to my question, the more I wonder. Even though our son Ryan’s AVM hasn’t been treated yet, we’re still allowing him to participate in baseball and ride his dirt bike, along with other normal kid activities. As long as he’s feeling up to it, I don’t want to unduly restrict his activity. That being said, I worry about letting him do anything that would raise his heart rate and blood pressure. But I also don’t feel good about wrapping him in bubble wrap and making him sit on the couch all day doing nothing. It’s such a quandry.

From the unscientific “results” so far, it seems that the majority of AVMs ruptured as a result of an increase in heart rate and/or blood pressure. But the majority certainly isn’t overwhelming, as is evidenced by most of the responses on this page. So what’s the point of restricting activity? A number of people woke up with screaming headaches. They weren’t doing anything at all.

In a few days (maybe this weekend) I"m going to go through all of these responses and figure out the percentage of people who may have had increased heart rate or blood pressure vs. people who may not have (just from my own judgement, absent any other way of determining this). I’ll post my “results” on this discussion.

Steven,

What an incredible story. I’m glad you had people there to look out for you. I appreciate you sharing this story with us. Brian injuries are strange - I couldn’t even remember my name when asked.

James.

Steven Leary said:

Steven Leary said:
I was at my oldest sons baseball JV doubleheader. I was perfectly fine the first game, during the second game I couldn’t follow the ball. It could have been a home run, foul ball, strike, I couldn’t tell. My wife kept telling me that something was wrong but I would tell her that the sun was causing me to not follow the ball and that I was fine. After the game I waited for my son to take him home with me. While I was waiting for him I started to feel like everything was starting to slow down and kind of getting darker. We got in the truck and I drove home which is about 10 miles away. We really didn’t talk much which we usually do after a game but that was probably due to me starting to phase out. Once we got home I called the father of a kid I was going to be coaching during the summer and asked him for his e-mail address. I couldn’t understand what he said and after the third time I told him OK and told my wife that she was going to have to call him because I couldn’t understand a word he said. My wife knew that something was definitly wrong and she has a medical background and started looking stuff up. She kept telling me that I was have syptoms of an anyersum. I told she was crazy and I went and sat down. They gave me some juice and a sandwich and called my stepmom who is a nurse. By the time she got there I was really knew something was wrong. She asked me what time it is and I replied “I don’t f***** know and I don’t f***** care” and I never curse in front of my sons. Then she asked me what day is it and I replied “Randy” who is a good friend of mine. She asked me if I would go to the hospital and I agreed and stood up and started walking to the garage. About half way there I blacked out and still made it to the garage where my stepmom and youngest son kicked out my knees and put me on the floor. My wife had already called the ambulance because she knew there was know way they would have time to get me to the hospital. I had a full blown seizure in front of my wife and sons. They thought they were watching me die. Worst day of my life.

Mine happened right before I was going to science and when I sat down I heard something and then I had a terrible headache and I started crying and yelling at my friends.

It happened in 1991, I worked that day and expierenced a headache all day. When I got home, I took a shower and then laid down until supper.
When I awoke, I still had a headache only now it was hurting even worse, so I took an amblance to the local hospital (no lights, I guess they thought I was just a wimp with a headache) by the time I got to the hospital, I was screaming in pain and holding my head. The Dr. there said “I hope it’s not what I think” I said “what” and passed out.
1 1/2 years later, I awoke.

WOW. You must have been so incredibly disoriented when you woke up a year and a half later! How are you doing now?

I have a more detailed story of what happened. It was 1:30 about to go to science class and we were going to have a party because we did good on the state assessments and we started to watch a movie and I heard a pop sound like when popcorn pops and I hid between chairs because all the sound was annoying me and when they offered food I said NO! and some of my friends started coming over and asking me if I’m OK and I always yelled IM FINE! at them and I wouldn’t even talk to my friends and finally the teacher came over and asked me if I was ok and I just admitted no. So I went down to the school nurse and she checked my tempature and all of that so no tempature or anything but I continued saying that I NEED to go home now. Then she went up to the teacher and got my stuff and I just barfed up everything I had ate that day and the day before on the floor and I got yelled at by a teacher get it in the toilet! About a half an hour later my mom was there and got me home and I layed there for almost two days ad my mom had to force me to eat or drink. then after movie night my mom came in and asked me if I was ok and I answered im not so good and she said “I forgot what day it is and I answered April 2nd (it was really the 23)” and she got scared and answered with what day is christmas and I answered april 2nd again and prettey soon they called one of my dad friends parents who is a nurse and she checked me and I had a heart rate of 53 a Min. so they got me to the emergency room as quick as possible and they gave me my IV and everything and they gave me my scan and they found out that I had AVM and it took them forever to even think about taking one because they thought I was just dehydrated and then they got scared (the town only has 3,000 people in it) so I got to Childrens Mercy in about an Hour and I spent a week in the ICU and a week in the other room.

That must have been scary for everyone (including you, of course!). How are you feeling now? Do you have any more doctors appointments?

My daughter Samantha, 10 months, was playing just like any other day. She started to get fussy so I put her in her highchair and she started screaming like I’ve never heard before. I was on the phone at the time and my friend and I both commented on how we had never heard a scream like that before. Ten minutes later she started projectile vomiting.

I was sitting at work in front of my computer. It wasn’t a particularly stressful day (no deadlines that day and not all that much to do), and all of a sudden my head starting hurting so bad that I had trouble holding my head up. I laid down on the floor for a bit and then called my husband to pick me up from work. But then I went home, walked the dog, and even worked out. I woke up twice during the night due to the headache and it still wasn’t gone the next morning. I went to work anyway, and, it wasn’t until a co-worker insisted, that I went to the ER. I was admitted to the ICU later that day, much to the surprise of my entire family. I kept telling the nurses that I must be the only person in the ICU who arrived at the hospital via the subway! The irony of my bleed was that it occurred during a time that I was the healthiest in my life. I had made a promise to myself to work out every day, drink lots of water, and eat healthy, which I had been doing about two months prior to my bleed. I obviously had a small bleed (no vomiting, no blackouts), but I always did wonder if there was something I did to bring this on (maybe my body reacted poorly to cutting out junk food :slight_smile: ). I agree that nothing just happens!

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Kelly:),

I’m sorry to hear that one of a child’s true indulgences, ice cream, started your son’s bleed. I haven’t had a chance yet to read his story, were you aware of his malformation? My family was told that mine was something I was born with, but I disagree: I took a huge bump to the head when I was a toddler. Now, your question about what I was doing before my bleed occurred: I was in a heated argument with my mother; she didn’t bother telling doctors that when they evaluated me, I guess it would have sounded bad for a mother to say, “I didn’t believe her complaints of a headache; I thought she just wanted me to stop yelling at her”; so she omitted that fact to ems. I honestly believe that the concussion rocked my brain and with the fight I was having with mom caused my rupture. Paramedics said my blood pressure was out of the roof!

Hope that helps:).

Hollie

I was laying in bed watching a movie. i had just had surgery on my wrist and arm from a sports injury. i was taking percocet. i started feeling funny. my tongue stopped working. i turned to my girlfriend and tried to tell her i wasn’t feeling right. no pain though. then i had a grand maul siezure and woke up in the hospital. thats when theytold me i had the avm. i also have a rare condition called mixed connective tissue disease. which constricts capillaries. the mayo clinic, university of utah neurological center, and dr. spetzler with barrow are doing a comprehensive evaluation of both the avm and disease to see if it caused the avm. mctd is an autoimmune soft tissue disease and i’d suggest others be tested to see if there is any relation to growing avms.

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My daughters bleed doesn’t really fit your theory either. She had sleepover and her friend had just gone home. about 10 min later she started throwing up then complained of a headache and collapsed. Mind you I was told that there is a association to drinking alcohol & drugs. Though I don’t know all the details of this or any the details of how it exactly triggers the avm to bleed.

Emma,

Well, I am starting to notice a pattern: The majority of those affect by the bleed were sick! The day of my bleed, I woke up vomiting, and that continued all day.

Thanks for sharing:)!

Hollie

Emma said:

My daughters bleed doesn’t really fit your theory either. She had sleepover and her friend had just gone home. about 10 min later she started throwing up then complained of a headache and collapsed. Mind you I was told that there is a association to drinking alcohol & drugs. Though I don’t know all the details of this or any the details of how it exactly triggers the avm to bleed.

My son was only 6 months old when he had his bleed and he was at daycare. It did not seem like he was doing “anything” that stood out when it happened. However, I COMPLETELY agree with your theory. We have always given my son (now 5 and a half and an incredible blessing) very small bites of ice cream and snowballs for this exact reason. We are also very cautious about other things such as rides (only gets on very simple things like trains), him getting too upset or laughing too hard. I also agree about letting him be a kid and we try to do that as well. My sons AVMs are very involved and I would put him in a bubble if I could. It is a fine line of keeping or trying to keep your child safe and letting them be kids when you know the severity of what could happen if he were to have another bleed. I just put all of my faith in God, say many prayers, and enjoy him everyday!
God bless you and your family!

Hi, I have noticed the same thing except I wasnt sick or had not been vomiting nor did I pass out. Just my head was hurting so bad and nothing would stop it until the third day my daughter took me back to the hospital with my head hurting and they did the CT scan and saw that I had a bleed. The first hosptial was a small one so they transfered me to the Medical Center here in Houston did another CT scan and the amino before they even told me what was going on. At the same time I still didnt understand what they were talking about all I really know I was in a lot of pain that they were giving me morphine every hour in a shot and IV drip. It still wasnt until I went back to the doctor that next week that he started to explain what an AVM was.

Hollie Seabolt said:

Emma,

Well, I am starting to notice a pattern: The majority of those affect by the bleed were sick! The day of my bleed, I woke up vomiting, and that continued all day.

Thanks for sharing:)!

Hollie

Emma said:
My daughters bleed doesn’t really fit your theory either. She had sleepover and her friend had just gone home. about 10 min later she started throwing up then complained of a headache and collapsed. Mind you I was told that there is a association to drinking alcohol & drugs. Though I don’t know all the details of this or any the details of how it exactly triggers the avm to bleed.

Diane K said:

My daughter was 15 and eating lunch in her school cafeteria. She suddenly experienced a horrific headache she describes as like fire inside her head. She left lunch and tried to go to class but was soon staggering and making little sense. They don’t serve ice cream, but I suppose she could have drank something cold. But she DID experience transient headaches rather like a mild migraine on and off for about a year and a half prior to the bleed. We would talk to her pediatrician and get ready to investigate further, and the headaches would completely stop for months at a time. Hindsight is 20/20 they say, but looking back these headaches simply weren’t dramatic or persistent enough. Don’t know if this helps or hurts.

It seems that, consistent with the research I’ve read, most (but not all) people experienced some rise in blood pressure, and that triggered the bleed. For my son, it could have been the ice cream and my little half-baked theory. Others were laughing really hard, angry at someone, running, biking, or doing some activity that could have caused a rise in blood pressure. Still others, though, were sleeping. (Hmmmm. I wonder if an intense dream could cause a rise in blood pressure?)

The neurosurgeon we saw yesterday recommended surgery for Ryan’s AVM, and one of the things he said was that for the two-to-three days following the surgery, they’d purposely keep his blood pressure low in order to reduce the risk of a post-operative bleed. I’ve read about that on this website and in the research, too. Blood pressure seems to be a key.

So what do we do about that? How do those with AVMs where surgery isn’t recommended keep their blood pressure down to reduce the risk of a bleed? Do you want to avoid all emotion and activity? Do you prefer to limit the obvious triggers (bungee jumping, sky diving, bull fighting, etc.)? What do you think?