Share Your Story Send It To info@avmstories.com
Share Your Story Send It To info@avmstories.com
Hi everyone I am Suzanne & I created the site.
I'd first like to say that I know there is lots of websites that come up when you google AVM but I wanted to create a website where AVM warriors/survivors share their stories. I wanted people to feel like they are not alone in this AVM journey. What I have found in this process is there are people who have AVMs in different parts of the body that has affected them in different ways. Each one of our stories are different however we all have/had the same malformation which really kind of connects us in a way.
I was born with my AVM (most people are) they found my AVM in 1993, it was so rare back when they found mine that they normally didn’t just find them. Women would go into labor & their brains couldn’t handle the pressure so they would have a bleed and die or possibly stroke. Other times when people had AVMs they would just have a bleed which would either kill them or cause a stroke with major deficits.
When they found mine when I was in 6th grade. I was really sick from meningitis, they treated me in the hospital then sent me home. At home I was still really sick so my mom brought me back to the hospital. All the doctors told my mom I was faking but my mom knew I wasn't and was adamant something was wrong. Finally a doctor recommended a MRI & that is how they found my AVM. Shortly after about 10 neurosurgeons including Dr. Robert Spetzler of Barrows Neurological came into my hospital room & told me I had to have brain surgery. I was only 11 at the time and my mom was at home dealing with my 4 siblings. She was really upset when I called home and said “guess what mom i don’t have to have another spinal tap, I’m going to have brain surgery.” Any parent would be upset hearing that from their 11 year old.
My brain surgery was scheduled for 11/13/93, it was supposed to be a 6 hour surgery but ended up being 12 hours. When I came out of the operating room my mom thought I was gone because I had so many tubes hooked up to me, including tubes in my neck. The doctor (Dr. Spetzler) told my mom that he couldn’t remove the AVM because it’s part of my motor skills (motor cortex). If he did remove it I would lose speech and be absolutely paralyzed on my left side. He said we’re just going to have to monitor it to be sure it doesn’t bleed.
Needless to say every headache I was rushed to the hospital. My poor mom spent countless hours - days & nights - in the emergency room. I appreciate you mom for being there for me.
We monitored it throughout the years and luckily the AVM was pretty stable besides headaches. However in 2008 my ankle would roll a lot. I’d be wearing heels & walking then just fall. So I went back to the neurosurgeons & they said that I had developed drop foot because of the AVM. They wanted to go in and do embolization’s to cut off the blood flow to certain parts so the issues wouldn’t continue up my left leg. Even though I was 28 & a single mom with kids at home I agreed to it. I did sign papers that stated there was a 2% chance of stroke & I could lose hair - it listed all possible side effects. I had 2 of the procedures in Dec 2009, when I came out of the procedures I had flat effect which was similar side effects of a stroke where I couldn’t smile & my face was emotionless. It did fix itself after a week or so. The doctors wanted to do another one right away but I told them I wanted to home to be with my kids for Christmas. The doctors scheduled the 3rd procedure 1/25/2010. When I came out of surgery I couldn’t feel my whole left side. They had caused a stroke during the 3rd procedure which made me had to learn how to walk again. After the stroke they sent me to a skilled nursing facility. I am sure it was hard on my kids during that time. I remember it being super devastating, my whole world changed. Here I am single mom, sole provider & I can't take care of myself. Regardless I had to fight and be strong to get myself back to where I could provide for my kids. I worked really hard and finally got off a walker 2 1/2 years later however I still had to wear a brace on my left foot/calf which is called an AFO but was doing pretty good. In 2014 I got hired at a large tech company and have worked for them ever since.
In 2019 I started having these feelings where my left arm felt like dead weight. I remember even asking my coworkers if my arm looked funny.
Covid hit and we all went work from home in March 2020 & my situation just gradually got worse I was no longer getting dressed everyday and driving to work. I started using the walker again full time in 2021 because I had several falls. By November of 2021 I was back in the neurosurgeons office asking why I can’t use my arm/hand anymore. They did some procedures and realized the AVM was much bigger and that there were new veins feeding the AVM. They said it’s grown so much that it’s now affecting the part of the motor skills that controls my left arm. They did gamma knife and tried radiation on that specific part of the brain but did say that we won’t see any results right away; if we do see results it wouldn't be until years later. They actually wanted me to come back for a 2nd Gamma Knife procedure but the first one was so rough I didn't go back to do the 2nd one. Everyone says Gamma Knife is easy but I was sick throwing up, bad head ache, slept for weeks straight.
Now my whole left side doesn’t really work. It’s extremely hard because I need help with pretty much anything I do & I live alone with my dog. I’m grateful I can still talk and kind of work but to be honest I have had some sort of intermittent leave/FMLA for days I can't work for like 2 years. I’m grateful that I can work from home because if I had to go into an office I couldn't.
I am homebound I really don't go anywhere unless I have to go to the doctor. I wear an AFO on my left foot 24 hours a day because my ankle rolls and I don't want to fall. I can't use a standard wheelchair because my left arm doesn't work and have no grip in my hand. I can't use a walker because I can't grip it, I am currently waiting to get approved for a motorized wheelchair (been waiting months). My AVM is in my right frontal lobe as well which affects my emotions and sometimes I get very depressed. I can't even dress myself, shower myself, or put on my own shoes. I know it could be much worse but when you go from being very independent to needing to rely on everyone is it's life changing. I feel like I am back in 2010 when I had a life altering health issue.
My 68 year old mom takes care of me, everyday she comes to my house to help me.
I look at old pictures and wish I could just walk normally again or get myself dressed. I wish I could take a shower on my own or pull my hair up and do my make up. I wish I could lift my left arm or give a loved one a normal hug. I wish I could go outside and feel the sunshine on my face. I just have to accept this is my new life & not give up. At least I am still here.
Life happens fast don't hold grudges. Be grateful for your loved ones. Be kind to strangers as you never know what they are going through.
Suzanne
Copyright © 2023 - 2024 AVM Stories - All Rights Reserved.
Site Created By: https://hypedupmarketing.com/
We use cookies to analyze website traffic and optimize your website experience. By accepting our use of cookies, your data will be aggregated with all other user data.