I’m a 42 year old woman. I don’t remember much about my life before my first two AVM’s were discovered when I was only 5 years old. I was a lucky little girl to have them be discovered, however not so lucky on how it happened. I grew up in a very abusive home and my father thought it was alright to smack around his children. He got very upset at me one night and nailed me across the face so hard that he had to go out into the snow to get some to ice my face down. My symptoms started about a month later. I experienced severe headaches and stiff neck, nausea and vomiting, and eventually a really high fever. My fever was 105.7 and for a 5 year old child that is very dangerous. He had caused 2 of my AVM’s to begin leaking. Eventually after a lot of testing because this was 1990 and no ones first thoughts were oh this is possibly an AVM, but after a couple weeks of tests my AVM’s were discovered. Well, at least one of them was. After about 12 hours on an operating table they closed me up and scanned me again to find there was another one they had missed. Another 6 hours in surgery to repair that one, 18 hours in total and they thought I was all cured. I was unable to move anything on the left side of my body after surgery. Which meant at 5 years old I was relearning to walk and write because I had previously been left handed. I eventually with years of therapy regained the ability to walk, but my arm didn’t return to even close to before the AVM’s I dealt with growing and struggling in school due to a learning disability no one knew I had. I made it to 17 and was preparing to go away to college when we decided to do a follow up scan to see if there were anymore. My doctor forgot to call us with the results as she said she would do if there were any concerns so I left for college thinking I was okay, but of course I was wrong. They found something troublesome on my CT and I needed an angiogram STAT! Well after the angiogram I learned there were 3 more AVM’s in my brain and I needed surgery. I got the surgery and my worst fears were realized. After I woke up I could no longer use my arm or left leg again. It sent me spiraling into a very dark and angry place and I lost the man I loved because of it. I swore I would never be that version of me again, and I haven’t been. The comment I get the most is how can you go through so much and still smile, because I know God isn’t done with me yet. I have had many other diagnoses happen as a trickle effect from those AVM’s, but I’m grateful to be alive and I have accomplished so much more than anyone ever thought I would. I have 2 beautiful children and I have two degrees and working on a third. I’m fortunate to have a wonderful supportive husband, but more than that I’m so grateful to be alive when I’ve been told so many times I wouldn’t be. If anyone had a similar story to mine I’d love to hear it.
Hi @JessiRose
In my view, it is always those people who have the least who give so much; those who have no money who are generous with their time or love; so it is with you. You’ve had among the hardest experience but you are able to draw great opportunity, great appreciation for life from all of that: it is inspiring.
I read an article about a white-tailed eagle, part of a family that were in the Scottish Highlands earlier this week: the eagle had broken its wing as a youngster and the RSPB (British bird protection charity) had watched his parents focus on keeping him fed for an extra year as he got better but the charity had seen him out and about flying on a bent wing, so they knew he had made it. I also watched a crow the other day which had a damaged foot and was hopping around on just one foot. In both cases, it struck me that the alternative for both birds was pretty much to curl up and die and that’s why both were just fighting on.
So there’s no real alternative, is there, but to just get on with life and do it, make the best of it, get everything out of life that you can and enjoy it.
I’m very fortunate to have discovered my AVM before it bled and got it fixed in time but I know we have others who’ve gone through some of the same challenges as you. I hope some will be inspired to share their story. I also tend to think of the extremity or facial AVM patients here as often having a lifetime of challenge with their condition. It is hard for lots of people.
Thank you for telling your story today!
Very best wishes,
Richard
Richard, thank you for your kind words and inspirational story. I am so glad that yours was found before any real damage could be done. I’m grateful to have found a place where people understand what I’m going through. Have a blessed day.
Hi Jessi!
I’m so sorry for both the abuse from your father and your AVM’s, you are such a strong person!
You haven’t dealt with one AVM but 5 and 3 surgeries!!? Wow.
I got to know about my AVM when I was 19. I got sent home to enjoy Christmas and after that it was planned for me to do open brain surgery (where you awake during yours? Cause I was supposed to be which scared me A LOT). I don’t even remember that Christmas to be honest… But when I had the meeting with my doctor he said that it was too risky to do such an operation and that he would take up my case in the rounds with doctors from all over Europe. Another hospital, a doctor that I had been in touch with, called me and said that Boston, America can do the necessary procedure. Yay me, I get to see America, I thought.
Another meeting with my doctor came and he said basically, “why awake the sleeping bear” and that I should just keep on living like nothing has happened. I asked him what I should do and he just said “I don’t know, go to university? Keep close to the hospital.”
And as any life-threatened 20 year old, I first got really depressed but then moved abroad and tried to heal myself (mostly my mind) through yoga, mediation and breathwork. A couple of years later after the yearly MRI suddenly the AVM had grown and I got sent to the second doctors hospital where they now had the same proton radiation therapy as in Boston. One of my greatest fears and risks with this was for me to get paralyzed in my left body…
Luckily, I didn’t! My foot is cooked though so I can barely run and I walk funny, but I’m so glad I didn’t end up in a wheelchair. You’ve lived my fear of rupturing AND loosing connection to your left side (by the way, I’m also left handed!). How is it today? Can you use your arm and leg?
Sending a biiig hug and a bow for all you’ve been through, you awesome, strong woman 
Mia, thank you for your kind words. To answer your questions. I was not awake. All my surgeries were asleep. I can use my left arm to an extent. I have very poor dexterity and my left leg, my biggest issue is my ankle. It is very weak and I have foot drop. So running isn’t a smart idea for me. I’m in the USA, if you ever visit PA please let me know. I’d love to get to meet someone else like me.
Hey Jessi!
Yeah, my left leg is my biggest issue as well. I try to keep it as flexible as I can through yoga and some workouts. I have foot drop too, but use ankle support inside and have some different AFOs, carbon fiber AFO and anterior AFO and it helps me to be able to walk long distances with my dog.
I would love to visit USA again! I’ve been to California and Florida so far. I’ll def let you know if I will go again! Would be lovely to meet you.
Hugs from Sweden 