Returning to Health

The Dr. told my family that after my AVM, and cerebral bleed
that I would likely soon die or be brain dead. I didn’t hear about
what he said for some weeks, but I would have agreed with him.
At one point I could not even turn over in bed after my operation,
but people did not give up on me, and in time I slowly came back.

When I got to come home it was hard to believe. Wife told me
that at her work she had a friend who had started to make plans
for my wake after my death. I laughed when I heard that and told
her that it would now be quite a wait for that, and what I said was more true than I could have possibly dreamed.

After I came back, I used to wonder if I was not really in some hospital in a coma, dreaming up all of my “second life”. But no it is real, and I really did survive. It has now been more than 15 years. It is just almost too good to be true.

Some of you went through at least what I did, and you may live and
come back fully to life even sooner than I did, even if it is hard to believe. Try to come back. I will be rooting for you. I hope that you do!
As the wise say, “Anything is Possible.”

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Hi John!

I just wanted to say, Thank you so much for sharing your incredibly inspiring and positive story. I am sure I am not the only one who needed to see this post. People are being diagnosed every day, going through recoveries from bleeds or strokes or undergoing/awaiting treatment. Posts like this are so important to help encourage us through the hard times and to keep fighting. It is a shame sometimes people reach your stage and sort of move on and dont share their acheivements, and so we don’t hear stories like this as oftern. But I am so grateful you are sharing your sucessful recovery with us! :relieved:

For me, I had my first embolisation surgery last month. I intially felt amazing returning home after 12 days in hospital. But recently over the past week and and a half - I’ve been getting odd symptom after odd symptom, feeling more and more exhausted until yesterdays odd visual disturbances. My treatment journey isn’t over and they are now rushing me in on wednesday to be seen by my neurosurgeon and have an MRI done. But reading your post really helps remind me of the light at the end of the tunnel and that I am so lucky to be alive, helps more than you could know.

I wish you every happiness, continue enjoying all the beautys life has to offer and sharing your positivity and wonderful outlook on life with the world :smile:

Very best of wishes,

Corrine

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Thank you, Corrine. Things will get even better; that is my wish for you.
You had recently odd visual disturbances? I had some "double vision"
after my operation. It is good that you are going to have your visual
problem checked out.

Best to you, and I want to hear in the future even better news from you!

John

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Thank you so much John for your kind words and wishes :slight_smile:

I’ve had a number of odd symptoms the past week and a half since I weaned off the steroids:

  • slight numbness on my left leg (would be expected anything weird to happen, to be on my right side)

  • pulsating pain where my AVM is located

  • intense dreams where I wake up talking out loud

  • finding writing difficult, the coordination of moving the pen to write, hand writing change and slower

  • exhaustion when I had really improved energy levels whilst on the steroids, felt on clowd 9 before

  • yesterday had a circle of vision loss in my right central vision that expanded then remained the same size, slept it off after staying awake for around half an hour as I started feeling too drowzy and even more exhausted. Woke up with neck and back of head pain and still drowzy. This symptom concerned me most cause I have a left occipital lobe AVM (vision centre of brain controlling right side vision).

But yeah glad they are now investigating what is happening! I had quite a bit of swelling after my surgery and I think maybe they weaned me off the steroids too soon (was only on them for 2 weeks) - would be a quick fix if its that and could just go back on them for a little longer :crossed_fingers:

Thankyou very much, been working on a blog sharing my experiences, looking forward to seeing it transition from pre-diagnosis, to diagnosis to treatment, recovery and then what I get up to once I move forward :smiley: will definently share with you once it’s complete and keep you updated!

Best of wishes,

Corrine

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