AVM Guide for Patients and their Families - Question #6

AVMSurvivors.org is in the process of preparing a guide for individuals that have been diagnosed with an AVM. The purpose of the approximate 20 page guide is to provide hope for a vibrant future, information about treatments, life expectations, and help for family members encouraging an AVM survivor. Over the next week, you will see me asking various questions concerning your AVM experience that will be shared in this guide.By participating you will be a source of help & encouragement to newly diagnosed AVM patients, their family, and concerned friends. So over the next week or so, be looking for questions from me concerning your AVM. By responding to these questions, understand that your answer may or may not be shared in the guide. After the questions have all been answered, a team from AVMsurvivors.org will begin the editing process, which will conclude with a guide that for many years can be a reference of hope for those in our growing community.

Here is question 6 -

How has having an AVM changed your life?

Example, my AVM showed me people's true colors and how precious real friends were.

Thanks again,

The AVM Guide Team

I'm not even sure of how to answer that in a way that wasn't too too long to read! The example used is a good place to start though. I wasn't surprised that people kind of faded away, I expected it because of my age and their age. I'm only 28 and most of my friends are under 25 and still get excited about spring break. What was really shocking was which ones decided they couldn't handle "seeing me this way." The transition period, since I had a bleed, has been horrendously taxing on almost every relationship I have/had in my life. But because of this, I now know the true value of friendship and that extends into my family. Other than that, every day is challenging and so, my AVM changed every aspect of my life, but there is always a bright side, if you're willing to find it.

Oh, where to start? Well, my life looks nothing like it did before the AVM. I describe my life as Tina before AVM and Tina after AVM. I am completely different, in every way. Not necessarilly better or worse, just different. Before I was focused, driven and determined. I'm much more compassionate, empathetic and I take time to smell the roses so to speak. I'm very grateful for my life and I'm not afraid to loose it. I thank GOD for all he has given me and I'm more appreciative for the little things, that's for sure. However, sometimes I struggle with the before and after part of it. I miss the old me and I try to be HER sometimes. I forget a lot. When I pretend to be the OLD me and sometimes I do a pretty good job but most of the time it makes my head hurt, I feel better about myself but it doesn't last long and I get confussed and tired. So who am I fooling? Or hurting? Just myself. Everytime. Then... Depression, sadness and longing for what I used to have. Silly, really, when what I have right in front of me, life, is so good! So, learn from me. Learn to be honest with yourself and except your new dissabilities. Okay, I'm no expert, I'm still trying to figure it out, but the new you, is just as good, sometimes better than the old you. Or, so I'm told.

Strange as this may sound…having an AVM bleed was a blessing. It took me many years to come to that conclusion. For example, I took a voluntary leave of absence from my job for 7 years. Another family member needed help and I went back to work. One of my first trips back I had to work Philadelphia to Montego Bay Jamaica. A passenger was very confused and acted lost. All the other Flight Attendants wanted to ignore his problem. I walked up and asked if he had a traumatic brain injury and could I help. The family told me he had a craniotomy. I shook his hand and said welcome to my world. When they left we were friends. I help physically and mentally challenged people everyday. I do not regret my AVM bleed.

Having the AVM and the resulting bleed changed every single thing about my life. I don't think there's any way to quantify it. Beginning with the obvious, the results of the bleed: I've got a left visual field loss, memory problems, trouble recoginzing numbers and some words, dizziness, anxiety, noise and light sensitivity. I cannot drive so I must rely on others to get me and my children where we need to be. I am no longer able to work so I am on Social Security Disability at the ripe old age of 42. On the plus side: I've learned just how amazing my husband really is (I already thought he was pretty spectacular), how resilient and loving my children are. I absolutely know what is important in life (here's a hint: I isn't what kind of car you drive or how big your house is) I don't sweat the small stuff. I treasure each and every moment with my family. I think overall I'm happier now than I was before the bleed. That experience put everything nicely into perspective for me.

Having an AVM and a massive brain bleed has made me very different than I was before it happened. I now have depression, anziety and seizures. I have Aphasia which makes it difficult for me to read, write and at somes cannot remember the works I want to say. I also have vision loss on the left and write side of my eyes. Due to all of this, I have to work harder in my life than before. But I still do it because I'm a fighter!

How much time do you have? =)

I would say the #1 change has to do with my percecption and perspective. You never really know what is around the corner or if what you are told is truth and since life is super-super short (too much so to waste time and energy on blame, shame, guilt, and regret), make your bucket-list items a priority and go for your dreams even when doubt or self-doubt seem to be the "champion" and your only "recording" in your head.

It would be easy for me to sit here and just list all of the physical changes but lets focus on the emotional componants. I tend to find myself worring about becoming physically worse over time. I tend to worry i am losing too much weight. I also tend to stay in my home often due to lack of indepedant mobility. Before the avm i was a avid runner and a work a holic. Now it is hard for me to accept my limitations. I used to have many friends but like the others they disappeared. My father has never left my side.

Yes, perspective, I totally agree. Things look different when you feel like you’ve been given a second chance. Love your story. I’m still amazed at how many of us are out there. It’s giving me a whole new perspective on things.

thats hard to answear i think it puts a lot of things into perspective it made me realise how important my wife and children are to me

I love your response Trish! As I was reading it, I was totally nodding agreement (with a few exceptions)! I can't say as I'm happier now than before but I would definitely agree with the part about things being put into perspective except mine hadn't been put there nicely LOL. I had to search for it, find it, analyze it, make sure it was correct this time because I was SO wrong before.

I'll try not to make this long. :-)
Since my AVM bleed, I've learned how precious life truly is. It a reminder that I'm here on borrowed time, so I try to make the most of it. I'm learning to enjoy life a little more, and going after what makes me happy. I'm also doing what I can to make time for my family and to enjoy my time with them no matter how busy my schedule is. I learned who my real friends are, and I am extra grateful for those who stayed with me, and still love me, limitations and all. The AVM has taught me how important it is not to judge...I tried not to judge others before my AVM, but I didn't really feel how much it means not to judge others until I was being judge on how I am post AVM. I try not to judge others because I don't know their whole story, and I've never walked in their shoes. I'm working on being more compassionate and more understanding towards others.

Just about everything in my life changed because of my AVM. I had a stroke of coarse, so that complicated things. I had to go on disability because I lost use of my left arm, and I cannot walk long. I had some family difficulties of coarse and have an ex now. I got my kids through school and off into college though. There is a lot I can do, but I am limited in a lot of things physically of coarse. A lot of my friends from the past I rarely see, though I have wonderful new friends.

Having an AVM has not changed my life as much as having had a severe brain hemorrage due to the AVM. When i had my stroke i lost my right side, upper and lower. Now my upper is coarsly coming back, but i am still not able to do basic things like writing. I was right handed. And of course the biggest change is that because of the effects the stroke had on my right leg, i am no longer independent. I need assistance to get in the shower, etc. As hard as i try to look for a positive out of all this, it’s really hard. There does not seem to be any. However, the negative aspects can be mitigated through adaptive technologies, etc. Nontheless, despite there not being a good part to having had this experience for me, there is an upside GIVEN that i did have this experience. That is, I am alive. Life is a wonderful gift. Even in my condition, I appreciate the wonder of being alive and to be able to perceive the universe. This is a really amazing thing.

wow, not an easy question. I found out about my AVM last year by accident, I am luckly so far no bleed and very few side effects.I guess the way my AVM as effected my life is learning to live with it, is it a time bomb, should I do something about it, getting my head around what could happen. Having to tell people (ie exercise classes, Gym, Boss), the reactions that you get and the way people look at you slightly differently. I am currently trying to live with my AVM but it is always there, always in my thoughts and thinking what would I do if something did happen.

Wow Suzy....My whole life was thrown upside down. Due to the depth of my AVM, I had brain damage & have had to re-learn pretty much everything again. I have 'lost' my husband as he couldn't cope with the 'new me'. I have seizures, so I can't drive or work anymore. My memory is terrible & so on & so forth.
The PLUS sides for me are finding out how absolutely wonderful my family are, always here for me.
I now know who my real friends are...those who accept me as I am NOW.
Finally finding this site which really is my life-line. The members I have met hear & beautiful friends I have here & the support that is ALWAYS here!
The ability to help, in anyway I can, our fellow AVM family members had totally changes my perception of life. Work on recovery, live life, enjoy life & "Keep On, Keeping On"!!

AVMS due to symptom unpredictability causes the sufferer to live life constantly worried about about when the next bleed will come. Our lives and our daughters life has sadly been immersed in these worries, so we therefore now live our life for today , if today is a great day and shes happy and symptom free, we are happy . Seize the day :)

My AVM hasn't really changed my life... Yet! Well, since I found out about it, I tend to be a little bit less worried about the smaller things in life... I'm a very positive person, and still am. The only thing I can think of is that I get afraid... Very afraid when I think about the operation and the anesthetic.... To fall asleep and not knowing if I'm changed....The anesthetic scares me the most!