Hi I'm travis

hello everybody my name is Travis. I’m 24 years old and I just wanted to share the scary story of my hemmorage with everybody. I was completely unaware of my AVM for my whole life. I don’t ever remember having any symptoms. This came completely out of no where. Well I am a Mill worker and I work rotating shifts, and the week leading up to my hemmorage was a particularly busy one with four 12 hour shifts in a row, followed by three 16 hour shifts without a day off. All on graveyard too!! Anyways, when I finally got a night off I took advantage of it and got pretty drunk with a buddy lol I think we drank fireball and then some wine later! (lol once the fireball was gone, it was what I had laying around the house lol don’t judge me). Needless to say I had a very bad headache when I woke up the next day. BUT, I finally had a day off and I wanted to take advantage of it so I went salmon fishing on my local river. Since I have such a weird schedule, this was on a Wednesday so I went alone because all of my friends were at work. I went to a spot 9 miles up the rural river road and fished for awhile. luckily this spot was not too far from the road. Now keep in mind I still had this lingering headache from the hangover all day. So I caught and released a few salmon and fished for maybe a couple hours when I had some malfunctions with my reel. as I was messing with my reel for a good 10 minutes I was beginning to get more and more frustrated and I noticed my headache getting worse and worse. I thought wow this isn’t right. I thought maybe I was getting a migraine because I had never had one before and I heard they are pretty terrible. But the pain got to a point where I knew something was wrong. My vision started to get blurry and then it would come back and my hearing was getting weird too. the only thing I could think of was “I gotta get back to my truck and get some water and advil”. So, I dropped my expensive gear right there on the riverbank and began running back up to my truck. Remember, there was nobody else fishing around me and I was all alone. I got back to my truck and drank some water and took some advil and I began to panic because i knew this was no migraine. it was by far the worst pain I had ever felt in my life and I started to slip in and out of consciousness. I got out of my truck and I was covered in sweat and I was puking and barely holding myself up and I started waving at cars passing by. multiple cars went right by me because they probably thought “oh it’s just another tweaker” and I don’t blame them because I probably would have thought the same thing. just a few weeks before that I found a man overdosing in his truck just a couple miles down that same road. Anyways, my guardian angel finally pulled over and the first thing he says to me is “dude you look f**ked up!” lol. I said to the man “dude I don’t know whats going on but I think I’m having some sort of attack my head hurts so effing bad!!!”. he sat me back down in my truck and tried to make me drink some water but he said I became pretty unresponsive. This is where my memory starts to get very fuzzy. I remember him asking me what kind of drugs I was on and I kept trying to tell him i wasn’t on drugs! I got to meet this man months later when I brought him a Christmas basket and he told me the story from his perspective. he said my eyes were rolling in the back of my head and i would go unconscious and then I would wake up for like a minute at a time then pass back out. Remember, this was way up in the woods so neither of us had any cell service. he managed to flag another car down that was on their way down the river road back to town. I guess he asked these people to call 911 immediately when they got cell service because he thought I was dying. Now I remember the paramedics getting there really fast! but when I talked to this man later he said it was the longest 30 minutes of his life because he thought he was going to watch me die. he said that once the paramedics got there, it wasn’t 2 minutes before we were on our way to the hospital because obviously they knew I was in critical condition. And that is where my memory completely stops until about 3 days later. This is the part that makes me very emotional everytime I think about it. my fiance (totally unaware of the situation, along with the rest of my family at this point) said she called me as she was getting off work just to check in and somehow I answered. she said she couldn’t make out anything I was saying and then a nurse took my phone and told her she should probably get there as soon as she could. Now I’m tearing up as I write this. The only thing that makes me emotional about this entire AVM ride that I’ve been through is thinking about my families reactions as they were told I’m in the hospital and they have no idea what’s wrong but I’m in the ICU. So my fiance tried calling my parents as she’s driving 100 miles an hour to the hospital and she can’t get ahold of them. finally she gets ahold of my brother and my brother high-tails it out to my parents house and informs them of the situation. when my fiance got to the hospital they took her back to see me. she said I had zero color in my skin and I had a blank look on my face but I had tears rolling down my cheeks. she said I was completely unresponsive. she asked the nurse how much medication they had given me and the nurse told her that they hadn’t given me anything! She said at that moment she thought that i would be a vegetable for the rest of my life. shortly after that, they rushed me back for an MRI or CAT scan or whatever. Like I said, the most emotional thing for me is to think about what was going through my families heads and all of the uncertainty. they didn’t know if I was going to live/be brain dead the rest of my life. But fortunately it all worked out. I guess the way my brain bled was the best case scenario for drainage and didn’t cause any significant damage. Anyways, I don’t really remember anything until a few days later. the whole next week was extremely fuzzy for me. I do remember being in excruciating pain though! I got discharged from the hospital after 7 days and my recovery was probably similar to everyone else’s. I eventually started to feel more and more normal and my neurologist says I don’t have any brain damage. I had my cyber knife treatments about 3 months after the incident (the last one was on December 30th. I begged them to squeeze the sessions in before the end of the year because my out-of-pocket maximum was paid for for the year :slight_smile: lol). after the cyber knife treatment my headaches have come back in full force and it’s basically something I deal with daily. oh well I’m just glad to be alive! anyways, I thought I would share my hemmorage story because it was a very scary one! my family and I are very very thankful for that man that pulled over and helped me. thanks for reading

4 Likes

Welcome Travis . I was very happy to find this group to chat with others that have gone through or are going through the same things. You are not alone. This is a very informative group and we are here to help each other.

Welcome Travis… wow :flushed:…that’s crazy… you are so blessed to be in such great shape…I’m so happy for you… I have full force headaches still too,usually in the afternoon. I think it’s from all the stimulation of the day. God Bless you and your family, and please share when you can,…once again welcome :sunny:

-Lorna

thank you! did you have the cyber knife treatment? I’m curious to know if other people are experiencing headaches after the radiation. Both my neurologist and my radiologist told me that I shouldn’t feel anything after my treatment until maybe 6 months later but I had terrible headaches about 2 hours later and I’ve had them ever since.

Welcome Travis. :slight_smile:!!

Welcome Travis :blossom:

1 Like

No, at least not yet. I find out next week. I had a seizure a year ago while driving, and a hemorrhage 10 days later. They found 2, 2-2.5 cm AVMs deep in my left occipital lobe. Between vision and language. Considered grade 4 by of the hemorrhage and location. Both were successfully embolized but I’m 49 years old and I do have some minor damage. My right side is numb, although completely functional, and I am now very forgetful and have some other silly side effects. I guess next week they will let me know about gamma knife but he’s leaning toward no. I get headaches from the daily routine, usually in the afternoon. I think it’s because the brain is working so much harder to do the same thing. I can walk and talk, and you wouldn’t know anything happened if you didn’t know me. God Bless.

-Lorna

2 Likes

God bless you lorna and wish you all the best :slight_smile:

1 Like

Hi Travis. Welcome. Quite a ride you had there. Has your Neurologist had you checked for swelling in your brain following your treatment? It’s what I would suspect so soon after. This could be found on a scan and would need steroids to treat. Worth asking the question.

1 Like

I was never checked for swelling but they just assumed that’s what was going on and put me on the steroid for a week. it seemed to work pretty good because it made the intensity of the headaches from that period immediately following the radiation go away. although it did not get rid of my headaches completely.

Hello Travis! :blush:

Hi Travis, welcome
You have been through such a terrible experience and still are able to be upbeat and joke ! That is so amazing. Your post made me laugh and cry

2 Likes

I’m glad I could entertain/move you! thanks for the kind words! I personally think that my poor family has been through more than I have! I just went through a great deal of physical pain for a short period of time and then I don’t remember anything lol. my fiance (she’s now my wife :slight_smile:) stayed with me every day in the hospital and never went home! definitly a keeper!

1 Like

So the headaches have increased again since you stopped the steroids? If so then the swelling has most likely not gone. There is the immediate risk of swelling following the radiation and you should have been given steroids for the day or two of your treatments. Then there can be some swelling ongoing for days, weeks, months or sometimes years. I would recommend you speak with your specialist again to make sure that this is not still an issue for you as if it is then it HAS to be dealt with.
Some anti-anxiety or anti-depressant medications can also help with headaches caused by AVMs but with your positive attitude I’m thinking that wouldn’t necessarily be advisable as they could alter your mood.
Hopefully you’ll get some relief with the headaches soon.
Stay as positive as you are :slight_smile:

1 Like

Travis,

I agree about the impact on the family around us. My wife is going through the mill more than me about this, I think, and my parents likewise. My wife is a definite “keeper” too, proved by this trial we are going through.

Richard

1 Like

Hi Travis,
I also had bleeds 2 in one week! I also wasn’t quite sure what was going on and was alone I was working on a construction site and my coworker went to get tools so I laid down on the ground and just couldn’t get up my vision was out I was dizzy and nauseous and felt like a knife was being twisted in my head! When he returned he wanted to help and I just wanted to lay there and not move I had been having migraines for years but I knew this was different I ended up going to my neurologist the next day who told me I needed to see a psychiatrist ! I promptly told him what I thought of him and called another explained what had been going on for the past year and a half he did an MRI and an angiogram and I had a diagnosis in less than 10 days! Avm in the occipital region I was promptly scheduled for a craniotomy I had 2 aneurysms that week and 6 bleeds over my lifetime I was 36 when I had the surgery I am now 55 and pretty much back to normal I was very lucky sounds like you were too! It took a few years for residual problems to work themselves out but be patient and try not to stress God will see you through!!

3 Likes

Travis welcome to the AVM-ers club! We are a select group that truly understands what you’ve gone through; your fear of the unknown; and wondering, “when will the dam headaches stop”! We are here to lend support and encouragement. We’re here if you need to vent. All of our stories are alike and different at the same time. My AVM ruptured 3 years ago sounded very much like yours. I’m settled into my new normal now. Like it or not, some things are different. The AVM journey is long and hard. Pace yourself along the way. Remember to Pray and most of all be patient! Wishing you all the best.

Sharon D.

1 Like

Wow Travis, very inspiring story! I’m glad you bounced back the way you did. You’re story was truly amazing dude. I’m the same age as you, 24 and love to fish too haha I found my avm by accident while processing to be a fire fighter. I had one of those ‘parking lot moments.’ I had taken a hearing test for the fire department and had one sided hearing loss. The fire department Dr had me retest with an ENT. I had the same result. The ENT passed me because I told him I had a big firework blow up by my ear when I was younger. He however told me that I should take an MRI to check for an acoustic neuroma (2% chance). I got to the parking lot thinking he’s crazy and that I’m perfectly fine. Then I thought to myself to do it for some odd reason. 2 days before I was gonna start the fire academy, the ENT told me he found a lesion. I went in and found out I had an AVM. The neurosurgeon told me it had absolutely nothing to do with my hearing loss though. I end up getting gamma knife treatment almost 6 months ago now. God Bless bro! You will get through this.

3 Likes

My son’s AVM was also an incidental find. He’s suffered a severe head injury and an MRI because of that found the AVM. If he hadn’t had the head injury and consequent MRI he would most definitely have passed away when he had his first bleed at 9. It was only because the doctors knew it was in there that they were able to act quickly enough to save him. Funny how sometimes bad luck turns out to be good :slight_smile: Hope you are doing well.