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AVM Survivors Network

New life


#1

My AVM ruptured in Janitary 2015, I was 30. It was a massive bleed. I was with my wife at the time and she was able to call 911 and save my life. Without her I would have died, I remember telling her the pain was going away and I’d be ok. I was actually foaming out of the mouth and bleeding out of my ear.

Here is the short story: I was placed in a medically induced coma and an emergency craniotomy was performed. I woke up and did in house rehab and learned to walk again with a walker. 6 months after waking up I learned to walk again on my own. A positive attitude and hopeful spirit go a long way. I went through multiple angiograms, Dr. Malik, and had cyber knife radiation. I’m still getting better everyday, even though the experts say it’s only a 3 year window. Recently it’s been the short term memory getting better.

Here is the long story: The ambulance made it to the hospital in under 20 minutes. The drive takes my wife and I at least 30 minutes. The doctors informed my wife multiple times, the bleed was too severe and I was going to die. An emergency craniotomy was performed by Dr. Osborne to remove the excess blood. I was placed in a medically induced coma, weeks passed including my 31st birthday and I hadn’t woken up. My wife was informed that I probably wouldn’t ever wake up, the damage was too severe, and if I did wake up, they didn’t know how it had affected me. When I did wake up, I was VERY confused. I had legs and there was no apparent damage to my body but I couldn’t walk, felt very drunk, and was saying whatever came to my mind- it is what I now refer to as my filter. After a couple of very hard weeks in the hospital, I could walk again but needed a walker. It was a miracle I was alive, let alone I could get around on my own. Every dr or therapist I ever met all said I would be ok because I kept a positive attitude, and I attribute that due to the fact of being very drunk feeling and God. My grandmother always said to me as an angry child, “nothing matters but Jesus”. It’s true nothing matters in life other than Jesus who is love. It didn’t matter I couldn’t walk, at least I was alive. I was released from the hospital shortly after. I had a very hard time in the hospital due to the fact when I woke up a lot of my filters were damaged. I am a veteran American man and you won’t tell me what to do, at least that was my thinking. I fell more times than I can count, I had legs so why couldn’t I walk. It also caused numerous problems with nurses and doctors, they act like they know everything and they don’t and I HAD to correct them, another filter issue. So I was released into my wife’s care. Before the stroke I was the sole provider as I was an electrician, my wife had to go to work in order for us to survive. I had health insurance and the owner, David Dickerson, of the company, North Atlantic Electric, kept paying my insurance for a whole year after the stroke. In Florida’s you are allowed to fire an employee if they can’t work, unless it’s a work related accident and it wasn’t. The insurance only covered about 3 months of out patient therapy. A month went by with no therapy and it got a little darker. Another miracle was around the corner, a high school friend, Dr. Natalie DeJesse, who became a chiropractor approached my wife and offered free, yes free, therapy. It lasted for over 2 years at Cima Health and Wellness where her father, brother, and herself all gave me therapy. I made leaps and bounds in my recovery. I now am now a stay at home father and the role in my household has changed. Which brings up another great point, change is inevitable. There are many ups and downs in daily life but I always try to focus on positives than negatives, I can’t do this or that but at least I don’t have to go to work everyday. I am off man-made medication, I only use canabis to help with the anxiety. I am now trying to rejoin the workforce and provide a better life for my family. I’m very blessed to be an American and have a disability allowance.

There are always positives, you just have to see them.

Peter


#2

Peter,

That’s a really difficult “journey”. Is your walking and your “filter” still an issue for you? How are you doing today?

I’ve been very lucky to discover my AVM before it burst – it was busy making washing machine noises in my head, so was able to get it checked before it went pop – so I’ve avoided the trauma that you and your family have been through. However, from reading a zillion stories on here and a documentary that I saw around this time last year, I know recovery takes a loooong time.

Its great to have you join our throng and I hope you enjoy supporting others through their tough times, just as we are all here to cheer you through yours.

Very best wishes

Richard


#3

Yes both are still not close to what they were. I don’t appear sooo drunk anymore but I am still having a very hard time learning to use my filter. One of the hardest things for me has been my anxiety. I’ve learned canabis, praying, and getting away help but no complete fix.


#4

it has been 3 years since my rupture… I still have anxiety and I think my filter is permanently broken…better, but still broken…it is a slow recovery process, hang in there!


#5

Welcome, and really great you’re here. You’ve come a great distance since your bleed, it is a long journey. Determination is so important, forward is forward, although never at the speed we would like. You’ll find an incredible group of people here, and although no two of these are the same, have a much greater comprehension of what it is like to be us! Again Welcome and take care, John.


#6

Hi, its been 30 yrs since my avm did the same. My story is almost word for word.
Positve attitude and a true belief that life is worth living, does help.
I have those funny filters too.
Its very hard to describe, but you did a great job.
My stroke came during the emergency craniotomy and it was and it is still a balancing act. However, it is worth the recover. A constant reminder of how fragile our lives are. You are doing so well, best of luck from a Crazy Canadian that also survived a definite life changer.


#7

Ohh boy, Ohh boy, OUCH to all of your comments here Peter.
My filter works, but has leaks :wink: sometimes MAJOR leaks :persevere: I often explain it as “I call a spade a spade and a shovel a shovel. Others may prefer me to call them digging implements to be all inclusive” Nope not me. If someone’s being an idiot, they get told (often with expletives). I’m often trying to catch those words after they have left my mouth, but it’s way too late by that time. DOH. I can offend without even trying, I can only imagine the offence I’d cause if I tried to be insulting. Hence I love the computer, I can edit, read and re edit and re edit again before I post.

“…and you won’t tell me what to do…” Ohh yea. I am not a nice patient. I have endured 6 neurosurgeries and I know what’s coming each time. PAIN, PAIN and even a bit more PAIN. To have some pimply faced nursey tell me how to manage… … my filter tends to disappear completely. My tongue turns into a cut-throat razor and ANYBODY contradicts me or pushes my buttons and they get slashed. NASTY.

It’s been a few years now since my last surgery and I like to think my filtering has improved ‘somewhat’ (My wife may disagree tho). My tolerances of others has improved, but when others talk of my pain and discomfort I REALLY have to consciously restrain myself. I mean I know I look awful when I’m in pain, I don’t need to be told so. I grit my teeth and try to say “You want to have a look from this side. What you see is minimal” But still you get me on a BAD day and ‘OUCH’ out comes the cut throat.

Merl from the Moderator Support Team