Hey, I’m Calli,this is my first time posting, so I figured I’d post my story. I was 23 years old (just recently turned 24) when almost 6 months ago I was hanging out with my boyfriend when I started to get a horrible migraine and tried to ignore it. Although I have no memory of it, my boyfriend told me when I was dealing with my migraine I lost the use of the left half of my body and I tried to stand up multiple times and fell over, I threw up and lost control of my bladder. He called 911 and rushed me to the hospital.I had such a severe hemmorhage that the entire right half of my brain was flooded with blood. I was pronounced “functionally dead” the doctor knocked on a wood table and told my family and my boyfriend if the wood was a 4 I was at a 3. They were told I could possibly not make it even after having brain surgery and the doctors prepared my family and my boyfriend for the chance of me coming out completely unable to take care of myself. They warned my family I could possibly lose my short term memory as well. By the grace of God alone,thankfully none of those things happened! I was moved from the icu to a normal room in the hospital. I remember, my room was down the hall from another stroke patient who was there for 2 months and unable to talk, and I was there 12 days after my stroke visiting with family and singing along to music.My recovery was mind blowing to the doctors. They called me a miracle. I spent jan 25th-march 1st in a rehab hospital learning to move my left side,walk and work through the damage my brain suffered. In 6 months, I went from being about an hour away from death to walking on my own with a brace on my foot, and a sling on my left arm which I can move but can’t control all the muscles, I worked through a left-side neglect and a temporary short-term memory loss and my concentration and attention was hindered by the stroke as well. It’s been a tough road, but I’m starting to work on getting back to driving again and my occupational therapist told me that he predicts I’d get full control of my left arm and hand again,which I’m super excited about! I joined this group because I was looking to find other young stroke survivors like me and I was looking to talk with people who understand what an avm is, and anyone who has gone through something similar as me.
welcome to the site!
You’ve come a long way in a short period of time so I’m confident you’ll continue to improve and get back to where you want to be!
You will find a lot of good information and good people on this forum.
My name is Tori, and I also had a stroke at 23 years old. I was at work when my Avm ruptured. Luckily, the office I was working out of, had recently moved and we weere 5 minutes from a hospital. When I arrived at the ER the receiving doctor on call, happened to be a neurosurgeon and had an idea as to what was going on as soon as he evaluated me. As it turns out he studied with the Doctor that performed gamma knife on me a few weeks later. I lose use of my left side of my body and had many cognitive set backs, but a year and a half later and I have wrapped up all of my therapies and almost back to a normal life! I went back to visit the hospital I was first sent to a few months ago, and the doctors and nurses that cared for me in the beginning of this process could not believe I was walking around their hospital and talking with them! Hearing stories of all the things that were in my favor when myAvm ruptured, I know it is nothing short of a miracle that I am still here. If you ever need someone to vent to or talk to/ask questions to please reach out, and welcome to the group!
Welcome Calli! Its great you’ve joined us here, and sounds like you’re doing really well. I certainly agree with Mike, you’ve come a long way, quickly. Its great to hear of your progress. Thanks again for joining us, John.
Hello and welcome to the group. It’s good here your recovery is going well. I had similar conditions after my AVM ruptured. I was paralyzed on my right side for about a month. Had lots of therapy to get everything back to normal. Ended up 4 surgeries done. There are 2 thing that I can’t get back from this crazy ride I’ve been on. They are I have bad right peripheral-vision in both eyes but I still drive. The 2nd one is a funny one but I can’t bend my right toes. It’s weird. Have complete control of my left toes. I had my AVM rupture way back in 2000. Was 10 year old at that time.
Hi Calli. I’m older than you and have an unruptured AVM of the Cerebellum. However it did cause a stroke ‘mimic’ back in 2016. My neuro thinks a blood clot formed within my AVM and gave me the symptoms of a stroke. I remember at the time feeling too young to have had a stroke, although obviously it does happen. Anyway tests revealed that I never had an actual stroke. But I definitely had the same symptoms - left-sided weakness meaning inability to walk at first, droopy mouth, unusable hand etc. I also worked with an OT and local rehab team and they were wonderful. I did my exercises, walking practice etc almost religiously. I thank my lucky stars every day that I recovered almost entirely and work, drive etc as if it never happened. I’ll keep my fingers crossed that its the same for you.
@HansenC94 Hello and Welcome - I was not as young as you but I was 43 and I was having what I thought bad migraines for 3 months. Then I had a massive stroke went into a coma drs thought it was an aggressive cancer that kills you in 24-48 hrs- my brain looked like there was fog in the middle. My left side was impacted. Day 3 they finally did an MRV and saw 5 blood clots and gave me tons of blood thinners but the damage was done and woke up 2 days later had to relearn everything. then 3 months later felt strange and that is when my left transverse vein blew out and then the AVM began to form and a few months later they found it.
I still have weakness on my left side, but I got my memory back. I still have some aphasia . I do have constant brain pain and that probably wont go away but I am hopeful once stem cells trials for the brain is over in 2019 I will be able get it and hopefully it will heal what ever got fried -
The good news is you are very young and the brain is great at remapping
A few things that I believe were essential in my recovery was taking 1 to 3 tsp of coconut oil a day - the brain needs fat to heal. Having a positive attitude- and listening to your body…so if you feel too tired to do something rest. My body was craving fruit and good fats. I needed a lot of sleep at first. I played gamesforyourbrain.com every day - I ate a lot of baskin robins…
Hi Calli. I was 53 when I discovered I had an AVM. Given my age, the Dr. wanted to operate right away. So after a couple of embolizations within a week of each other, the 3rd week I had it removed. It was a size 4. One size a away from being inoperable. Got it in time as it had started bleeding. My doctor said I too could have been wheelchair bound or even mentally affected. Wow, you actually had a major bleed and yet you are still with us with good prospects of full recovery. I am so happy for you and your family. It truly is a muracle. I have to say that it was good they discovered this at your young age. Your body may not have recovered like it did. Thank you for sharing your story. God-speed. -Julie