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The tactics and mindset I use in my recovery after my AVM ruptured in March


#1

To make a long story very short. In March my AVM ruptured. I had no idea i had one until the angiogram after my emergency craniotomy. All surgeries were a success thank god including my embolization. My wife made all decicions and great ones since I was unconscious shortly after my rupture. When I woke up from an induced coma, my leftside of my body lost all connections with my brain and sensation as well. I was an infant again in a sense. But, by adapting the tactics and mindset below, I have been on a miracle recovery road I am so proud of. From bed being a total assist, to a wheel chair to standing, to walking on a vector machine, to walking with a cane, to now even running on my own and being back at work (journey is 6 months and going strong so far). Please share your advice below I could always learn something new.

  • Be very positive
  • Never give up (Most important)
  • Challenge yourself (As a righty I forced myself to only use my left for EVERYTHING this was so big for me)
    *Practice even after Rehab and after being discharged
    *Give back however you can, it will always comeback
  • Be Happy
  • Celebrate every small victory
  • Be patient
  • Love your family and support system
  • Find your motivation
  • The mind and heart are powerful use them to your advantage

My surgeon told me once which has stuck with me. The moment you give up on your recovery, you are closing down shop. So i see my recovery as my business and I work at it daily!

I hope this can help someone…

-Mario


#2

I was told by the dr’s that 6mths post craniotomy that “This was as good as things were going to get…” Luckily for me I did not accept this and things improved further, now, sure I’m not back to 100%, that I will admit, but we can adapt. I have the attitude of “Never Give Up”. My recovery has not been easy, not at all, in fact it has been one of the biggest struggles of my life. But I’ve never accepted “This was as good as things were going to get…”

I completely agree with your list, especially “*Give back however you can, it will always comeback” Prior to all of my medical I was working in the disability sector, now I’m the one with the disability, but I learnt so much from my clients on how to manage this awful reality. That ‘comeback’ has repaid me 10 fold.

Merl from the Moderator Support Team


#3

Love how you keep fighting the tough battle and we will get to our new 100% there will always be room for growth even if it is not physical. Keep up the great work and giving back to this community which has helped so many


#4

I totally agree with you, positive minding makes a lot of difference. Really happy that your recovery went well.

Our 11th years old son’s recovery after his bleeding last year went so well because he was positive all the time and saw it as an adventure. He approches his craniotomy the same way a few weeks ago signing and dancing before leaving for the surgery. Result : he was out of hospital in 5 days and never looked as a kid who just had a brain surgery. As parents, we took the same approach and tried hard not to show him our concerns and tried to have fun on the way.

As an extra suggestion to your list, I encourage the caregivers to film every new steps, every little victory to document it and to be able to show the AVM survivor the progress made in a period of doubt or discouragement.


#5

Your positivity is commendable and I’m glad to read that your path to recovery has gone so well. Back to work in under 6 months is fantastic! I think it’s important to remember though that not all people afflicted with AVM/aneurysm are as fortunate. Some after their rupture and/or treatment will remain with disabilities for life. For others their recovery at the 6 month mark will still look very bleak. My daughter is now 20 months out from her rupture. Her bleed was catastrophic and her surgeon told us an adult would never have survived it. We are always very positive and she remains motivated to get stronger but I can tell you as her parent I worry about her future every day.


#6

I absolutely love this! Cheers to never giving up!


#7

It’s great to here your in good recovery. I can relate to how you felt. My AVM rupture caused me to be paralyzed on my right side and was temporarily blind. It was a long recovery till I was back to normal. After a year was back in sports doing basketball but later on in school tried track out. They put me in the 800 meter.