I know that I have changed since my diagnosis. Mostly for the good, I think. But sometimes....how can I explain this....I feel separated from everyone, including myself. Does that make any sense at all???
I changed a bit and most of my friends/family remarked that my personality took a turn for the worse. Looking back though I think it was due to all the pain I was in. I too wouldn't change anything as I've learned so much, but I can relate.
YES KAREN! Makes total sense. My friend who is the AVM survivor keeps trying to explain to me how he feels separated from himself. That he knows (his name is Bootsie) he says I know Im Bootsie but its like im a different Bootsie all together..separated from the previous one. Please give us any feelings or feedback that you wish to share...he and I would love to hear it :) He will already be so relieved he is not alone in this feeling. He also says that he can remember things really clear from a long time ago..like 10 20 years ago but that things that happened yesterday seem so far away. Things from the past feel right upfront he says. Sound familiar?
myself, ive had 3 bleeds - so i figure that now, im at least 4th version of the original for me lol. But its true - anyone had a bleed on the brain, will no longer be exactly the same. Be it speech and langauge, memory, visual, physical - some part of u will be damaged in some way. Some maybe only slightly damaged, but unfortunately some will have bad side effects.
Absolutely Danielle! After the AVM, i always say, that there is a new normal.
I have also come to realize, that worrying is a luxury, When you feel so terrible,
you do not really worry about a lot of things (except your basic needs).
good luck, Heidi
I know how your feeling my AVM bled in the front lobal of my brain but I can remember the day it happened like it was yesterday. That was in May 2011, my name is Darren, but the old Darren has gone now since my AVM surgery. Family members do say the old Darren is in there somewhere but I call myself the new Darren because I'm a different person now. I keep positive and take one day at a time........ you do change when you have a brain surgery. Things change in everybody's life time, I'm alive and I'm very grateful for that! in my experiences so far listen to the doctors because they have your best interests in mind. I hope this helps in same way :)
Yeah. My doctors kept telling me: The old you is dead. & to some extent, I do feel that way. I am definitely much different now. & I don’t remember the entire month of December before I had my AVM, but I remember everything from the fall & from ages ago. It’s just weird. I don’t feel the same at all.
That's one of the greatest things about this group. I AM NOT ALONE. I have symptoms that there is no way to know medically whether they are related to the AVM. But it is comforting when I find out someone else has the same thing.
I have recently recalled things from the way back past....like I was 3-4 yr old (and that's over 50 years ago). And they just pop into my head out of nowhere! However recent stuff it still recent stuff. And sometimes I wish it was in the way back past - LOL!
A new normal. I have had a few of those and will probably have more.
We are the sum of our experiences. Some experiences affect us more than others.
Yes since my brain surgery I see things so much different. My family members even say I act different now. I appreciate more, but sometimes I want to be alone. I don't know why. I don't like being around too many people, I start to feel overwhelmed sometimes.
Hi Danielle - Yes - Part of my change has to do with having a totally new perspective, including the many different ways that I need to do things now and needing to have quiet/alone/reflection/mindfulness/focus (phew…exhausting) time which I actually really like now.
From being a very “external” person to being more of an “internal” person is very noticeable, not only to me but to others as well.
I’m finally okay with this change; however, others expect me to be that “external” person, again…it’s just not going to happen…so there’s a little challenge there.
The good thing is that this has prompted me to really look at what’s a good fit for me and what I need to let go of…by no means an easy task.
Hi Danielle
Since being diagnosed with AVM over last week, I truly believe that over the last few years my emotions and personality has changed and think its now caused by the AVM. I get angry over petty things, that wouldn't normally effect me.
I put it all down to pressure of work, life etc and have been feeling depressed for quite a while.
I keep feeling detatched from things, people and emotions, as though I am in a bubble.
I am waiting to get the "next step" discussion with the neurosurgeons, however reading the comments tabled, it seems a lot of people have experienced some form of emotional or personality changes.
When I had my AVM removeded, I tried to tell my Dr. I feel different he said you will be fine, that I should pray to god im alive. He never listened. I know inside who I was, I can feel her, but now IM SOMEONE DIFFERENT. My children and family saw the change. I was independent and now im insecure, I could multi task and now I cant remember things, I loved being around people now I love my quiet, its hard for me to explain, but I thought I was the only one, I felt lost til I read this,
Hey there :) I am typing for my friend Bootsie and he wanted to say to you that he too would try to explain this feeling to other people and even to me for over a year. It was not until he shared these feelings here that anybody else could understand what he was talking about..he is very grateful that you just shared with him. He also feels that it is best to talk with other people that have gone through these experiences. The doctors have not dealt or felt what you guys are feeling. It is great to come together in this type of forum and be of service and strength to one another.