How is everyone doing; I am still doing well after 20 years from my brain AVM surgery. I still say God is Good!!!
Hi how are you doing? Again, I survived a ruptured brain AVM surgery, 20 years ago and it was quite hard as I was married to a violent alcoholic. But the Lord was with me every step of the way. I couldn’t even focus on my recovery as I had to figure out my life with an alcoholic; he really scared me. Again the lord was with me and helped me figure out my life. I have been single for many years now and have adjusted to the recovery of my ruptured arm surgery. I only have a few problems from brain surgery but find ways to cope with them.
Hello! How are you doing?
I’m doing very well myself and I have surprised myself by realising that it was seven years ago!!! this week that I found myself in the consultant’s chair, being diagnosed, “You have what we call an arteriovenous malformation…” What happened to those seven years? I really can’t believe it!
I’m very sorry to understand that you’ve had so tough a time but it is very good to know that perhaps the worst of it was now 20 years ago, quite an astounding period of time.
It’s good to hear from you. Do feel free to talk a bit more about how you are, the things you still have to deal with and how you get through. It can be helpful to other people, perhaps next week, or next year or several years away yet.
(By the way, I’ve moved your post into its own thread, so we can talk more exclusively about you and how you are doing, and anyone who fancies joining in the chat).
Very best wishes,
I’m glad to see your doing much better after all these years… I don’t think anyone that has had an AVM has not been traumatised one way or another… like you I thank God every single day for what I endured during this time & never go without a day thinking about it… God bless!
I’m about to celebrate 14 years recovery by going full-time on my new job but I got DKA and now must find a Diabetes friendly position. A break please?
Cookster, its good to hear from you but wish it was with better news. How are you managing the symptoms? I know there is sometimes a period of adjustment that is extremely difficult. I’m sending wishes for a break your way! John.
I would like to say I’m doing well but that would not be entirely true. I’m definitely hanging in there though. My AVM is very very large and it’s pretty much my entire left buttock, hip, upper thigh, and then it also goes through my pelvis. I’ve had 3 very traumatizing embolizations and have put off having another even though I need many more and will probably have to keep getting them throughout my life. But now I don’t have any health insurance so I can’t treat it anyways. It’s very stressful to say the least. But I hope that one day, maybe, there will be a better treatment or even a cure for AVMs, especially ones located on areas of the body that are harder to treat such as mine. I like to live in my head a lot, in my own little world, and pretend that I don’t have an AVM at all and that I’m leading a normal, worry free, healthy life. I’m only 22, and I’ve had health problems my whole life even before diagnosis of my AVM. This is the only way I can cope because I get extremely depressed seeing other live their lives to the fullest while my youth is just slowly slipping away and I can’t be like normal 22 year olds. But, it is what it is and I have to try to make the best of everyday despite my circumstances.
Definitely feel for you & many others.
Like I mentioned before, I nearly know nothing about AVM’s in other parts of the body aside from the head.
It’s one thing I felt for sure - at least I was almost 40 before I came down with a severe hemorrhage
Now 43, I’m still dragging along “ok”
So glad to hear this. I was recently diagnosed with an AVM near the pelvis area/iliac artery. So happy I found this forum, a bit lost right now and praying for the best
Feel free to talk about how you are doing. We all go through quite a shock upon diagnosis so you’re among friends. It’s great that you found us.