32 years after a stroke, living with AVM

General
1

I joined this site today and delighted I hope to meet other members living with AVM.

It is quite recently that I had a detailed interview with a friend of mine who is a psychologist, who is more than interested with the differences in my lifestyle before and after I had a brain haemorrhage in 1985. I always felt after the surgery that I became out of place in society as I saw things differently. It is only this year to discover that I have Mind Blindness, a theory more than a medical condition, that has changed my path in life, with advanced abilities and disabilities not looked at by doctors. It is a fascinating field that I am new to, but has been beneficial for me since. I hope to discuss more of this in the future.

I am interested to contact with other members here who think and behave different, living with AVM, or coping after surgery.

I live in Dublin, Ireland and as I do not know of any people here, I would love to hear other peoples experiences from abroad.

1 Like
2

Great you’re here Frank, and certainly sound to be a wealth of experience. I’m 16 months out from my AVM bleed and 10 month post gamma knife. Still making some adjustment for sure! I find my perspective has changed quite a bit, much more understanding of the unseen ailment and mental health. For me it was a learned behaviour as I went through a variety of challenges. Most of my changes are not noticed by others as I’ve largely physically recovered, those who notice recognize my perspective shift in various areas as noted. I look forward to hearing more. Take Care, John.

3

Welcome Frank:

My AVM ruptured in 2013. I am being treated with Gamma Knife Radiation. I have changed in so many ways that sometimes I hardly recognize myself. I am more understanding of people. I am so much less judgmental. I am more patient and I was never a patient person. I cry easier. My feelings get hurt quicker. My priorities have changed tremendously. And, most of all, my long term memory is sharper that ever! Some times, a long ago memory will just pop into my head and I’m amazed that I can recall the details. My short term memory is fairly good, but no where as good as my long term. The hardest thing for me to recall is, “what I had for dinner today or yesterday”. I have to relive the entire day in my mind before I can tell you what I ate. That is so weird. I think all of us have faced a variety of challenges both mental and physical during our AVM journey. We may not act and feel the way we did before, but we’re willing to deal with whatever comes. You are not alone on this journey. We’re in it too. Wishing you all the best.

Sharon D.

4

Hi Frank. I am Lulu and live in the UK. I first started getting awful headaches when I was 12 and at 14 I had an operation to put in a Shunt as I had Hydrocephalus. 10 years later an MRI scan showed an AVM in right Cerebellum. I feel really lucky because my AVM hasn’t caused many deficits in my everyday life. The one thing is that my Hydrocephalus is recurring since my AVM blocks the normal escape route for CSF. As I get older (I am 43) I am realizing that my attitude to things has changed as a result of my medical condition. Attributes that I thought were just me when I was younger could easily be down to my AVM. My short term memory is shocking and balance pretty poor as well.

5

I am happy to talk with you. I had an AVM bleed and craniotomy in 1959, when I was 8 yyears old. I felt like an alien afterwards, and still do at times. I,d be very interested in your subject. I live in Florida. Thx beans

6

Thank you for the responses. I hope to read all your own stories. I would like to ask some questions to anyone who had a bleed or haemorrhage, and how have reacted to them.

Here are some, and I will answer them myself.

1- Have you ever felt fearless, after surgery, or after therapy.

In my case, I was firstly suicidal when I understood my condition, but with in a few weeks, I became oblivious to fear. Over the years I became even more calm in dangerous circumstances.

2- Can you remember any feelings during after a coma?

I was in a controlled coma for 2 days. It was a good 4 years after where I paid more attention to the feelings I had after it. I had no visual nor dream memories during it, yet the feelings were difficult yo explain in words, deeply contentment or happiness, which I met other sufferers who had similar feelings from longer times in a coma.

3- Did the experiences now living with certain disabilities, makes you more aware of things, or changed you perception of life?

It did for me in a positive way. I was very much a single minded person, with goals for money, wealth and positions in society. With the impact of the AVM made on me, I became an environmentalist, a vegan and long term walker and charity organiser for similar health problems.

4- Did your AVM change you religious beliefs?

I was raised as a Roman Catholic where I was expected to become a priest at some point when I was 17. The events changed that dramatically, not in a negative way, I became much more spiritually minded, yet more distant to the organised part of the religion. In a sense my mind was more free, as I had poor memory for a few months after the AVM, where I was thinking for myself and less so for what I was told to believe or know.

Thank you again for the responses and I hope to have a few more people to speak freely on a one and one also.

Frank

7
  • Have you ever felt fearless, after surgery, or after therapy?

I am more calm in dangerous circumstances; I have the attitude to deal with everything step by step and not get overly worked up by things I cant control.

2- Can you remember any feelings during after a coma?

I remember nothing.

3- Did the experiences now living with certain disabilities, makes you more aware of things, or changed you perception?
I am much more empathetic to people and less concerned about material things and status in life.
unfortunately I have less tolerance for others “petty” problems.

4- Did your AVM change you religious beliefs?

I think I am more spiritual now; not really religious just more aware of the unknown.