Living with AVM

Is it safe to be pregnant with AVM? Is it possible to travel and live an exciting life?

It is not a definitive answer to these questions, although many have come with suggestions on these topic. I can only take the basis from my own story and share it further to you, maybe it will help someone, or be the starting point for discussion?

I suppose it helped me that I did not know I had an AVM during my pregnancies, but I did know about my seizure and numbness and was naturally worried about how this would affect me while I was pregnant and during childbirth. I decided, even so, to go through with pregnancies, taking great care and noting down when or what triggered my seizure.

It was times of worries but mostly not, I learned how to adapt around my seizures and to rest a lot.

I gave birth to two of my three children at a planned home birth with a midwife, and everything turned out just fine :slight_smile:

Still, if I had known about the AVM and the risk off bleeding, I do not think I would have taken the chances I took giving birth at home, but I do not regret, what a wonderful experience :slight_smile:

Even though it is nice to finally have a diagnosis and an explanation of why and what caused my exhaustion and seizure, I am still glad that I did not knew it before. There are so many things I have been lucky to experience that I might have found difficult if I had known, like backpacking traveling, living abroad (UK, India, Nepal, México), experiencing different cultures. Now that I do know about the AVM, I still think it is possible to live an exciting life, because I already have experienced it :slight_smile:

What I am trying to say, is that it is possible to live an exciting life even if you think you are “a ticking bomb”, take care of yourself, listen to your body and have plenty of rest, do not stress, and “everything” is possible :slight_smile:

Great post…very motivating! You are such an amazing person! And I love your positive outlook on things and life. :slight_smile:

Thank you, for sharing your experience.
Good luck and take care of yourself.

Thanks, it helps a lot to put words to thoughts, very therapeutic :slight_smile:

Interesting post. My avm didn’t stop me from carrying on as ‘normal.’ I went to college, got a degree (eventually, long story, I was quite unwell through much of it due to the pressures.) Now, after alot of ‘mistakes’ (pushing myself too hard) I live a slower life, respect my limits, and have re-defined what ‘exciting’ and ‘satisfying’ is. I appreciate the small things in life loads.

How do you manage coping with any fatigue whilst also being a mum of 3?
All the best

Flower: I was living with my AVM a long time before I finally got the diagnosis. I did not know the reason why I felt so tired most of the time and tried to keep pace with everyone else. I had a great explanation problem when I was not able to get up in the morning, take that bike ride or climb mountains etc.
Nevertheless I tried my best to keep up, and managed most of my tasks regardless, even if they might be taking me longer to fulfill. I have learned not to push myself to hard and that has made life easier.
Today, I appreciate the little things in life, live in a totally different pace, knowing it is not the pace of the life that is “exciting” but life itself. I am trying to fill the day with positive thoughts and laughter, that helps me get through the days without feeling exhausted and fatigued.

My children are very understanding and helpful, it makes it all much easier to be a mother :))

All the best to you too
Hanne xxx

Please tell me about your numbness. I have had three embolizations and two gammas. I have had numbness which they say is seizures from healing?

I was diagnosed in 1983 and due to the size/location, they were unable to operate on my AVM until this past Dec. I have been very fortunate to just pop some pills everyday to keep me seizure-free. I have been able to do everything I have ever wanted to do with an AVM, it has always felt to me like I did not even have one and I feel very lucky. And luckier now since technology has caught up with my AVM and is now being obliterated.