WOW!!! I wish this was available when I started on this journey!! It will help soooo many people when they feel lost and overwhelmed with information!! Great job James!!
To answer the question...after my bleed and surgery in 2000, I went skydiving once I had recovered. After the discovery of the second AVM in 2010, I spent 10 wonderful days in Italy. I have already decided that when the news comes that the occulsion is complete I will celebrate with scuba diving in Riviera Maya. I have embraced the Nickleback song "If today was your last day" and it has become my inspiration!!
James,
Wow what an amazing idea- can't wait to see the finished product!
In response to your question, I was diagnosed 16 months ago. My symptoms were treated with the first embolizations. I was told that I would not experience any other significant problems or difficulties, even though it will take a while to completely obliterate the avm. Thank G-d this has proven to be true. However, when I was first diagnosed I didn't think I would be able to continue moving forward. I never thought I would have the emotional strength and ability to continue life as normal, with the worry of this new "mess" in my head. Due to certain circumstances, I have decided with my parents to never reveal the news of my situation with any of my friends or family. That just added to my stress and inability to cope with my situation. The first week after I got home from the hosptital, I was walking through the motions of life in a haze. But after one particularly depressing day, I decided to turn a page in my book of life and start anew. I am now a new person. I am proud of my accomplishments, proving that it IS possible to live a normal life with an AVM.
-Birdie
Hi James.
I had surgery to remove an AVM when I was 15 yrs-old -- that was in 1981. The AVM never slowed me down -- not before, and not after the surgery. I skied; rock climbed; took karate; roller skated; learned to drive; got married and had a baby (who is now 18yrs-old); became a preschool teacher... I did everything that I wanted to do. I recently found out that I have 2 more AVM's and will need brain surgery, but I don't plan on letting that stop me from living my life to the fullest.
Cheers,
Kristy
Live!
I had brain surgery in August 2011 I went bungee jumping at 85 ft high! I wasn't sure I was ever going to be able to ride roller coasters much less bungee jump! But even with an AVM you have to live life to the fullest! I'm not sure I would of ever went bungee jumping if it wasn't for my life/death experience
from my AVM.
Hi James - I started a disability resource guide (not all resources, of course) if you are interested in including - though, it sounds like you might have your hands full with 20 pages. Let me know.
I thought of others...this will be my last entry...promise.
Drove (as co-pilot) to NY for my ex-fiance's dad's 80th bday, attended one of my favorite aunt's funeral and my "coma-mate's" funeral, lived on my own and found transportation and many other resources to help me get by, cared for two cats...I've been quite busy, apparently.
Carried a 9lb. infant son to term, after several doctors suggested a termination. My bleed had already occurred, and at that point , terminating would not improve my injury, or the life of an unborn child!! So i carried Joseph to term. and he is a beautiful 2 year old who loves his siblings and grandparents. And he is learning to talk!
This is a great idea. We'll probably have an appendix of resources for AVM patients included. Definitely keep following up with us on this, Julie
That is awsome! I also am completing my MBA program come May 5th 2012! I actually started it not knowing I had an AVM at all...and then a stroke set me back a whole year! But after my stroke on Feb. 5th, 2011 I went back, now on a wheelchair and not being able to write due to my affected right arm (had assigned note-takers so it was OK), and did what I had to to finish and now I'll graduate next Saturday May 5th! Needless to say, neither my family nor I imagined it would be possible, at least not so soon...but I did it! So definitely, it is possible to do things one never imagines after an AVM stroke!
My granddaughter was diagnosed with a large, diffuse AVM in October 2010- she was 6 years old at the time and we were devastated and could not even think of a future for her. She was and continues to be a very active little girl - takes tap, jazz and hiphop - is very creative and has a very active imagination. Grace is growing and developing with minimal AVM effects- thank GOD.
My AVM did not bleed and treatment with embolization therapy kept it in check for 9 years. I was working as a fire fighter paramedic and was constantly worried that I would have to give up the job I love. After a return of my symptoms and more angiography it was discovered that I had an aneurysm, too. The concept of surgery was very frightening. I had no AVM-savvy support group. I told no one at work, just took some time off for my craniotomy. The recovery was difficult because I wasn't sure I would be the same. It all worked out, and probably the most significant result is my sensitivity to others facing similar circumstances. We may be "owned" by an AVM, but we are not defined by it. How we respond to the situation comes from our strength, faith, and support. THAT is what defines us!
Kudos to Ben, my friend Suzy, and all the others who have converted dis-ability into THIS-ability!
FB
I am actually doing Zumba. I have an active AVM running off my left Illiac artery and at one time I could hardly walk. Have been having procedures (Embos etc) for over 10 years now. So for an AVM survivor and a 61 year old lady thats not too bad.
I carried on as normal largely. I got married in 2000, had 2 amazing kids in 2004 and 2007, and eventually became a company Managing Director in 2005. Basically I didn't let it put anything on hold. Carry on for the now.
Started running five days a week. Lost thirty five pounds. Went back to working again which I hadn't done since before I had my daughter. Got out of a unhappy relationship. Got a tattoo on my birthday which I always wanted to do for my brother I lost. It's a japanese symbol that means Remember. It's for him and I both.
The AVM has changed my life completely, at first I was terrified and depressed and then one day I woke up and realized I was just wasting time worrying about it all. I cannot do anything more about it at this point, so I started moving on and focusing on other things.
Hoping to go back to school soon as well :)
1 Like
I have learned a lot of latin that is for sure :)
learned more than I thought I would about the human body, medical terms etc. I didn't think I would be able to slow down as my parents were work-A-holics and so I was never allowed to slow down as a child and that continued when I went into the military. I have been able to learn how to reduce stress and live a better life and eat better and appreciate my body and what I have taken for granted. I have been able to over come so much pain and anxiety with KT and also the AVM and the symptoms it causes. I grew up in a very high stress house and again like working too much I never thought I would be able to learn how to relax and enjoy life and I am still working on that one.
This will be a wonderful blessing! Because I dont know much about my condition, I've been afraid to do anything since my avm rupture, but I do thank you all for the inspiration and hope!!
I had Stereotactic Radiosurgery 3 days ago on my avm, today I have been out and about on the beach with my hubby and 3 kids riding boards down giant sand dunes!! Never thought I'd be doin that so soon, was a great day and although tired feel great!
First, I didn't really know how long I would live after going thru this ordeal and afterwards I stayed in my home for 2 yrs. I was petrified to go anywhere. Since 1997: started driving again, got 2 golden retrievers and bred them, stayed independent, can function better (cognically speaking) and look forward to challenges in the future. I am married 34 yrs, am a grandma to a 7 yr. old girl. Life is different and did get better. It just took some time. :<) I am Blessed.
My first AVM surgery was on October 15, 2008. I have the most amazing surgeon on earth! Sorry, I don't mean to gloat, but I REALLY do believe that, and I KNOW he saved my life. Dr. Robert Spetzler of Phoenix, AZ. Dr's in St. Louis had told me I was inoperable, and had painted such a bleak picture that I was turning into a zombie... losing hope... and afraid all the time. Through my wonderful wifes research on the web, we found Dr. Spetzler and sent him all my tests for a second opinion. He agreed with the St. Louis Doc's on many aspects of my condition, with one exception... he said he could "get it out". When I met him, he did not mence words... when I asked what I could expect... he was very frank... "paralysis, coma, death"... that was his answer... He went on further to say that without the surgery I could also expect... "paralysis, coma, death". Not something anyone wants to hear. But I felt something special about this man, and surrendered myself to his care. My surgery went fantastic! Seven days after surgery in Phoenix, I was on an airplane bound for home in St. Louis. I did have some residule effects. Tired alot... but as I sat at home, worrying about work piling up on my desk (I run my own business, and if I'm not there to do my work it doesn't just go away, it just keeps stacking up!) I was really getting antsy. A lifelong friend of mine stopped by one day and he could tell I was going stir crazy. He owns 80 acres of prime southern Illinois hunting property. He challenged me to get up and go hunting with him. I hadn't hunted in probably 20 years, but the thought of it did excite me. He and I traveled up to his farm, and on December 7, 2008... just 7 weeks after my brain surgery... on a very cold (5 degrees above zero)winter morning, I found myself twenty feet up a tree in a rickety deer stand, looking down the barrel at the first deer I would ever harvest. Since then I have taken up archery hunting and I have to say, I've watched many deer walk under my stand and am so amazed by their beauty that I just let them walk on by. It's just being in the woods... in the trees... that is so satisfying. Sometimes I'd really rather have a camera that a weapon. But my time there is so special. When I first found out about my AVM, I though all was lost. Never though I'd climb a tree again...
Additionally, I served as the Head Coach for a college ice hockey team. I thought I had coached my last game the weekend before I left for surgery in Phoenix. It was an emotional scene in the locker room as I bid farewell to "my boys", and my staff. I wasn't sure if I'd ever see them again, much less be back on the bench. I worried that coaching was all a thing of the past. As it was, I was able to return to the team the following year, and we won the Mid American Collegiate Hockey Association Championship that season. I was awarded with "Coach of the Year" honors from the League... my peers... maybe as much for surviving as for coaching...and it was one of the highlights of my life.
So may people helped me get to where I am today, I am humbled by it. I owe so much to so many... I can never repay it. I awaken every morning thanking God for my good fortune, and that is what may be the most remarkable thing that I have found I could do after my AVM surgery... APPRECIATE - life, love, friends, family, and last, but not least...God... may he bless all that read this with what he has bestowed on me.