This March will mark 6 years since my AVM bled out and I haemorrhaged. My last logon was somewhere in 2015, around the time I found out I was expecting my first baby… so I decided to fly under the radar for a while… in the years since then, through two high risk pregnancies, for which I am so grateful to the Almighty, I’ve been blessed with 2 beautiful little girls… however, each pregnancy resulted in micro bleeds… after the birth of my second baby, I’ve had 3 micro bleeds… I’ve been having severe AVM related headaches and due for a MRI angiogram… surgery has been ruled out as the risks outweigh the benefits and a second angiogram is moot if surgery isn’t undertaken… there’s so much more in between, but I guess that’s not too relevant right now… as it stands, the MRI is a catch 22… either there’s additional issues within the AVM (which may be treatable thankfully), or nothing at all which means living with the pain… that’s ok though… I’ve learned to live with it so far, but feel guilty as the pain is so debilitating at times, I cannot give my all to my kids and that really bothers me… to be honest, I needed to vent, so thank you to those who’ve made it to the end of this post unfortunately, everyone around me, great as they are, still do not understand this “AVM thing”… and I’ve long given up trying to explain… some things are too special for just anyone to understand
I understand what you’re talking about I have the same problem try to get my family to understand what I’m going through it’s like when I got my gamma knife a year ago back in January and everybody stress me out and they didn’t want to understand that I couldn’t be stressed out I bothered I want to be left alone cuz they didn’t understand what I was going through they upset me so bad that I thought I was having a stroke I’m found out I had a grand mal seizure what you get the living hell out of me so I know what you’re talkin about nobody really understands I really really am sorry what you’re going through and I’m with you all the way and when I went for my checkup this year they found a swelling on the left side the front of my brain
It’s great to have you both collaborating on the web site. There are a handful of people who seem to have suddenly started to chat here, having been off the site for years and years and it is great to hear everyone’s story.
It seems often the case to need to keep an eye on our AVMs and having a space to vent is important. It’s great that you’re here, sharing.
Very best wishes,
I can so relate to the family wanting to care but not understanding. And the feeling guilty if you can’t do what you want to. I want to do more and my wife wants me to do more, but there are many many days where I can’t do what is needed or I can’t get rid of the headache so I can do it or … You know that part in marriage vows, “for better or for worse, in sickness and in health”. She’s living that and I don’t like it.
I am learning to realize that I didn’t do this, I didn’t cause this, so I have to be verbal about what I can do and what I can’t do. “Dad, can you help me with my algebra?” “Give me a half hour after supper to rest my brain and then I will.”
It’s an. Ongoing struggle.
You are not alone.