AVM Definition

Surprise! Another discussion board post from me!

I need your input regarding AVMs and communicating and educating others on your experience.

My mom and dad will be celebrating their 50th anniversary later this year; my mom had the idea of incorporating an AVM fundraiser (which made my skin crawl at first - but the more I thought about it, thought it was a good idea) into the whole 50th thing...so what I'm asking from you is to write something like 1 paragraph or 1 sentence from anyone who reads this describing what an AVM is and how it has changed your life (good luck keeping that to 1 sentence!).

I figure that this will be a good opportunity to educate others on AVM and, at the same time, give people something in return for a donation.

...maybe best lesson learned, etc.

Hmmm...I'm supposing you don't want a clinical definition of what an AVM is, no? You're wanting me to be all deep and philisophical huh? Here's what I think: An AVM is like a ticking time bomb for many people. It has changed my life in more ways than I can explain. I know I will never be the same, but despite my challenges in many ways I'm a better person.

Our introduction to AVM was a nightmare: On vacation heading to MinnEsota, in a motel in Omaha, Chari & I woke up about 6AM and decided to sleep another hour before getting the kids up. At 7AM, she started kicking me and thrashing. She was not responding to me as she was having a grand mal seizure! Called the office- SEND AN AMBULANCE!!!!!!!!!!! I chased that ambulance across Omaha, while my Mom cared for our 6 and 8 year olds in the motel. The ER Doctors said she might die or likely enter a vegetative state and they were considering a helo to fly her across town as she might not survive another ambulance ride. So I went from being content with a healthy family with two young kids, to facing life without my soul mate..... That was in 1991; in a long and slow treatment process, she has had about 5 embolizations, two radiation treatments, and two brain surgeries, but is now AVM FREE. Except for some loss of leg control/foot drop and having to take anti-seizure meds forever, is back to normal. We feel so blessed every day that we are together and found skilled doctors to treat her condition.

Ron, KS

My daughters Avm diagnosis was a reminder, to tell everyone what they mean to you every day and love everyone to the fullest of your ability as it may be your last oprrrotunity to do so.

Hi Julie, When my 9 year old son gathered there was something wrong with me I told him that mummy had an AVM which meant that inside my brain it was like spaghetti junction and that it needs to be fixed. We joke about it and when I get a sore head he says, is it your ABC mum? LOL. We can't be living doom and gloom and children really do keep your spirits up. I am still awaiting treatment and should hear this month about getting my first embolisation. Take care and good luck with the fundraiser. Susan

Live, Laugh , Love is what my AVM is teaching me. I've taken so many things for granted in my life. I never thought the I would be going through this.

great. just looking for your own description. thank you.

I just wanted to add that I know that this isn't an easy thing for most - thank you very much!

I'm assuming - you never know, you know what they say about assuming - that there will not be any doctors in the house - you never know, but you might want to keep it to a warm, fuzzy definition as AVMs are usually warm and fuzzy - psych!

What you said is perfect.

One of my uncles gave me a bracelet that said the same thing.

That's a great attitude, Ninibeth.

Julie...I will totally do this...but it might take me some time to say what I need to say....Stay tuned!

Liz I like that analogy!

We also were told "time bomb", but can't recall if the Dr said "ticking or not".

Ron, KS

Wow, one sentence...cosidering how much I like to talk (and write) that is hard...lol...but I'll try...

How about... my AVM was life changing in that a lot of physical abilities were taken away BUT also life changing because it brought to the forefront what is truly important, family, friends, love and positive self-perception (and a few other things). It's now all good.

Dang that was two...told you it would be hard! :)

By the way, mom n dad had their 50th anniversary too and messed up ole me attended. I was so proud... Hope you're feeling well.

Wow Ninibeth, you said basically the same thing yesterday... I didn't steal it really... I just now read it. Ah well, great minds think alike... ok AVM minds...lol.

This is a link to the best discription of AVM that I have found.


I totally get it - whenever is good.

Two is great...I knew one would be a huge challenge across the board.

Thanks, Larry. Do you have something in your own words...or is that a chic-thing?