AVM Guide For Patients & Their Families - Question #1

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.

To start the questions off, would you please answer the following for the guide team?

"What are some of the things you have done since your AVM was diagnosed that you never expected you would be able to do"?

As an example, I went para-sailing on Lake Tahoe in 2010 with my cousin. Being I have only use of one arm, and am mobility impaired, I never would have thought I could have done this after AVM diagnosis.

Here are links to the additional questions asked to date:

Question 2 - “When you first heard about your AVM, how did your doctor describe it to you and more importantly, how would you describe it to someone just diagnosed that says ‘what’s an AVM?’”

Question 3 - What is(or was if it was removed) the location of your AVM?

Question 4 - How did you discover your AVM and what were its symptoms?

Question 5 - What treatment did your physician recommend for treatment of your AVM? Did you elect to do that procedure? And if you did, what was the outcome?

Thank you for participating, and the team looks forward to your answers!


The AVM Guide Team

James Larken Smith - Project Manager

Let's start this off... I got my MBA :J

That is awesome Suzy!

Never thought I could do it before the AVM, but it really didn't change anything, just gave me better perspective. I loved what Sherri said when she was eliminated from Dancing with the Stars... She said to run towards things you are most afraid of doing... Amazing lady (Funny too).

Super Hurrah! I LOVE this project!!!

The patient guide it kinda exactly what I was talking about yesterday! Kudos James on getting it started. I don't thik I can really answered the question. I wasn't diagnosed with an AVM until after it bled. I wasn't concious enough to know until after it was removed :)

Trish you can answer for sure. What have you done since you had your crainitotomy to fix it?

Wow - sounds fun! Great idea.

Suzy's schooling reminded me that I did an mail-in/online interior design course a few months after brain surgery...pretty much to see what I could do, but did it nonetheless.

I got an adult trike that I use so that I can still ride with my kids. They are great for people with balance issues! It gives me just a little bit of freedom.

An adult trike? Was considering a three wheeled motorcycle for the same reason.

Just remembered that I went to Buenos Aires, Argentina, (I don't speak Spanish, but picked up key words pretty quickly) and Ketchikan, Alaska, to visit a friend and see some sites.

Ended up going on a sight-seeing flight - the ladder was plastered on the outside, and a couple of guys had to carry me up. They looked a little freaked when I teased not to drop me in The Pacific Ocean - some people are so sensative =)

...and don't forget me as your "hood ornament" in the basket until I get my own. =)

This is going to be an amazingly helpful resource for future AVM patients! I can't wait to see the final book!!!!

Hi James, This is a great idea, well done ! I think that there should be a slightly different approach for AVM sufferers with peripheral AVMs as my 7 year old has a facial AVM which does not really stop her doing anything although we avoid her running around too much and we are trying too keep down her blood pressure. With Peripheral AVMs embolizations are regular , and could be every 3 months so this also hinders leading a normal life OR or trying anything too adventurous, although i will try to instill that life is going to be what she makes it and reach for the stars ! .Despite all this we try to keep normality of a day to day life, so doing something we never expected her to do yet, not really, we are just happy going back to a normal life !

I have done more since my AVM bleed than before. When you get a second chance at life, you definitely don't want to waste it. I've lived in China for a few months, built AVMSurvivors.org and, later, BensFriends.org, started a software company, and am now in medical school. I wouldn't have done any of that without my AVM bleed and the support of my AVM family here!

Fantastic idea, James....I really have to be less brain tired to think about it...but I will!

We will be covering the different types of avm's so make and answer that question later in the week. AVMs definitely both change our lives and like people come in msny forms dhapes sizes.

Oh, and Miami...glad you started this post...seems like a lot once everything is "written" down.

Well James...since my brain bleed, I've become a grandmother. I know live alone and do very well taking care of myself. I am now a moderator on two rare disease networks..AVM Survivor Network http://www.avmsurvivors.org and Amyloidosis Support Network, http://amyloidosissupportnetwork.org/

This guide is going to be a gift to so many James - thank you!!! This is a tough question for me to answer after being diagnosed with my AVM just a little over a year ago after my bleed yet can see myself embarking on things that I probably would have never even thought of pre-AVM! I look forward to seeing the finished project!!! ... Michele