My link to my first AVM recovery hospital

It was nearly twenty years ago, and I was in a certain hospital for two months,
for the operation to remove my AVM. I was in bad shape as many of you can
imagine, and I am sure that I did not know if I was coming or going! This dream is my
only memory of the place.

I dreamed that my day nurse came in to pack my few belongings in a bag, and
she had been so kind to me. She had seen how painful it had all been for me, and she
briefly cried for me. But in the dream I did not see her face or hear her name at all.
Was she a real person, or someone I made up to be in my dream? I guess I
will never know.

Then they brought me downstairs, and there was this large ambulance to take me
to my new hospital. It was almost as large as a bus! All that to transfer me? I was
impressed. Then I arrived at my new hospital, and I got more instruction in recovering
from my disaster. I could not walk yet, but I was introduced to a walker, and then to
a wheel chair. Would I ever walk again completely? Would I ever get to see my home again, and my two children? My wife only came to see me at the hospital.

One day after I was released from the hospitals, wife drove me back to my first hospital, and she showed me where I had stayed, and where the operating room was.
I really thought that I would find some memory there of that place, but no I had no
recollections at all.

Thank you doctors for helping me. Thank you God that I lived to return home!
If you come to a place like this…I hope that you also get to come home again.

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when my avm ruptured i experienced very closely what you did. my memory and various hallucinations were out of control and to this day I have no clue what happened or what the images i saw stemmed from. i saw a white narwhal swimming and floating through the ceiling and at one point he cursed my right foot and Iredell as though i would never be able to use it again. The silver lining is if you see a narwhal in a dream, it means everything will be okay :slight_smile:

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Time flies. I also had my AVM rupture back in 2000 at age 10. About this time 20 years ago was getting ready for surgery.

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I expect that maybe it was lucky to see it. You lived, and not all AVM patients did!
I am glad that you survived. My best friend had an AVM in 1996, and died from it.

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John_O,

You were young. I was 52 or 53. I am glad that you survived!

And I thought I was young when mine ruptured at 20. Awesome to hear you persevered my friend.

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i felt mine pop but didnt go to the hospital for 2 more days, i thought it was a migraine. but after throwing up and collapsing on the floor and 2 trips to the hospital because they didnt do a ct scan on the first trip. i only remember 4 of my 7 days in the hospital. but the thing i remember the most were the vivid hallucinations, i knew i was in the hospital the entire time but i would describe things to my dad. he was talking to my uncle one day and i remember stopping their conversation to tell them i knew i was in georgia and in the hospital and i knew what all was happening. but i told them if i closed my eyes i was in chicago (never been there btw) on a balcony in one of the tall buildings there. the dreams were absolutely crazy. they were taking me down for an mri one time and they raised my bed up to roll me down and i told the guy not to go so high i didnt wanna hit the top of the door. most of my dreams i think was because i was pumped full of dilaudid and stuff

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Hi, John,

I began my recovery from a craniotomy for an AVM over 25 years ago. I used to think about the events leading up to that hospitalization, try to recall times and staff I encountered during my stays… I did recall a few significant ones.

I am also an R.N., having cared for a large number of critical care patients. I can tell you that rarely did a former patient recall events or the nurses involved in their care. We understand. Between the illness itself, the mind being affected by medications, the attempts to cope, ETC… We humans focus all our energy into survival mode.

Just a simple “thank you” is more than enough. Thank YOU!

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You all remember much from those awful days! I am glad that I do not remember more.
When I collapsed I was certain that this was it, and I was dying, and had no one come along to find me…I still believe that would have happened soon thereafter.
We here are all fortunate that we survived, and survived enough to come to this website
and post these comments!

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I still try to make sense of the hallucinations I had after surgery. I swear I spoke with my mother, but she was in a care home and died 2 weeks later. My neurosugeon asked if I know where I was and I said “Bamfield”. I’ve never been there in my life so don’t know where that came from. I swear my 2 sisters were sleeping in beds on either side of me. One had a black box on her head and the other wore a large floppy hat. Neither were there. Can’t figure it out. I swear I saw my Dad waiting for my Mom…he had passed away 6 years earlier. On and on it went. Strange things, brains.

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JennyS,

I understand. Survivors like many of us on this site had to go through things like
that for our brains to start to recover.

In our house we had a microwave that we had for years. Came with the house.
Well, one day it went bonkers, and would not stop cooking when the microwave door
was opened. We could not stop it, and turned off the circuit breaker to quiet it.
For 2 or 3 days it was like that. We left it alone, and after a few days it began
to work correctly again. Like, hopefully our brains are working now. Does this make sense?

May all of us on this site fully recover and get into our “second lives”!

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I remember parts from my rupture. Mostly just enough pain to black out. I also flatlined for a couple minutes. Lucky was home with the family and not at school or a friends.

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Hi everyone, I’m 60, avm bleed at 14. I don’t have any clear memories. I think I saw my dad cry. I think the only other time is when JFK was assassinated.
He is 91 still living with my mom. Thanks for recalling this for me.

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I was a few days before going to the hospital, lots of pain, memory went including names and didn’t really listen to my wife, who is a nurse. She was trying to get me to go to the hospital but I knew better…although I don’t remember that. I drove myself to emerg, they gave me a CT scan and then things started happening. I sent my wife a text that said “I have a brain bleed, they are sending me to HSC (Health Sciences Centre) by ambulance, can you come get my truck”. I was quite concerned about getting my truck home, pretty funny to hear the story now. I spent 5 days in the hospital as the bleed had stopped, steroids, pain killers and home to recover. I went back in 6 weeks for another angio and then to decide craniotomy or gamma knife. Ultimately had gamma knife November 10th, 2016. It was 6 months to the day that I went in to the hospital. The neuro were amazed how I was able to function when they saw the CT, but am so fortunate it has worked out as it has. The truck story causes a few laughs.

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Beautiful words and true may you only have blessings in your life!!

Peace,

Justice

I want to shout-out to all of us AVM Survivor’s! We made it! We may have deficits, but dam-it, we’re here and I am so darn glad we are! Three cheers for us.

Sharon D…

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Yes, my daughter had one at the age of 17 (2018) and the 25 days she spent in the hospital was blurry for her too. As time goes by the segment of memory becomes smaller and smaller in comparison to the other memories that you rapidly start storing… Its best to forget it as a bad dream/nightmare whatever you want to call it.
The AVM for her was in an inoperable location and had to get a gamma knife done to “address it” . Its almost now 2 years the symptoms of headaches have disappeared and life goes on…We may have to get an invasive CT to measure the size or disappearance of the AVM. I am sure to those who have undergone through the trauma are unable to forget it and live in some percentage of fear …but there is always hope folks …live life to the fullest…Keep praying

Absolutely true, you cannot undo whats happened , but you have survived and are moving forward …God Bless

You drove your self to the emergency room? That impresses me.
After I collapsed, from my AVM bleed, my daughter called me an ambulance,
because I was on the floor unconscious. I thought I was dying, and I was
pretty close to being correct. I congratulate you! Best of all I am glad that many
of us survived our disasters!

I have been in this place, 8 years ago. I also returned home maimed but not broken. I’ve had good days and bad ones, and even days that i forget for a minute or two how my bleed changed my life. Memories of this time came: hospital transfers, walking/speaking for the first time, my wheelchair taken away by my PT, being afraid of every single twinge on my body, being afraid of wind changes when i was outside, etc, etc - but i choose to give them no longer than a few minutes time because I got to live! I want newbies to know this will get to a stable point and you will adjust to the new normal. Everything in the end will be OK, if it’s not ok, it’s not the end. Good luck on your journey!

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