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Survivors Around the Globe – Tori Kloss

On August 21st, 2012, being 12 at the time, I experienced the WORST pain, basically a silent killer in disguise. My AVM occurred in my cerebellum and I was not supposed to live. The doctors came out and told my parents (who rushed to Children s hospital of Pitt. right after I was lifeflighted) the WORST news. The doctor looked at them and said “I don’t think your daughter will ever wake up to recover” but as 4 days went by, my nurse yelled “TORI open your eyes for mommy!” AND I DID!!! I was awake and the doctors doubted me! The surgeon who saved my life was Dr. Tylor Cabarra, she ran up to my room straight out of the surgery area, scrubs and all. She said “Mom, dad, I heard Tori woke up” they both said “yes” and she said “she’s a miracle…and thats a word I never say!” and my parents overheard her talking outside of my room in the hallway as she said she couldn’t believe I woke up because she burnt 100% of something off of the back of my brain to stop the bleeding. I remember everything that I went through, everything people have said to me, but i couldn’t respond to them because i lost all my ability to talk, swallow, breath, anything. I was alive but I had no way to move or speak. It was the worst month of my life until I was taught to talk again, and when i could you best believe i was asking so many questions. I was so amazed by the things i was being told. I couldn’t believe it. As the hospital stay grew longer, I finally was moved to inpatient rehab. about 3 days there, i got really sick so they moved me back to the hospital. they gave me antibiotics and i was set to go back. well 6 weeks went by, and i felt the same way so they sent me back, gave me antibiotics and then i was back to rehab. this happened about 7 times. finally on the last round of antibiotics, my parents looked at me and said “wanna go home?” i couldn’t even voice to them. finally i said “home, home?” as i was in tears. After 3 1/2 long months, 90 days in children’s hospital in Pittsburgh, i was going home to see my family and my pets!! i was so happy. i went home the Thursday before Thanksgiving so we had a lot to be thankful for. we were home for 6 weeks, and again they took me back. I was sick again. More antibiotics, then home for 6 weeks, then i was back. finally on about the 3rd time, they took me in DEATHLY ill. they hurried up and got me to children’s and i had a CT scan done. I was so sick i could barely go even 2 minutes without throwing up. So they took me up to one of the floors, asking me questions. I was unresponsive. one of the ICU doctors (that knew me from past experience there) said “no, this isn’t tori get her down to ICU now” and they did. When I got down there they immediately performed about my 11th spinal tap. they got 5000 white cells in my CSF. The ICU doctor said “the only foreign object in her body that could be infected is that plate, so 6AM tomorrow morning we put her in neurosurgery’s schedule and they are taking it out” my parents couldn’t have agreed more. So the next morning comes, they take the plate out. Not even 24 hours later, it grew staph infection. Now how does a sterile environment have staph? we never will know. So they gave me a pic line in my left arm to go home with, on antibiotics. my mom put my first round of medicine in, in my pic line when we got home and it hurt like crazy. I told her so they took me to the hospital. I had a doppler done on it and it came back i had a blood clot. so that next morning, the OR put another one in my right arm and sent me home. That one was fine, i went and got it out about 3 weeks later. my surgeon said if i didn’t have anything in my head, (plate wise) to cover the craniotomy they preformed to take the AVM out,i would never be able to do anything really in life. But i’m a soccer player, so i wanted that thing back in! July 9th 2013, i had the plate put back in. i had an overnight hospital stay and came home. After all of that I am still here standing tall. Kids and adults talk about me “using my injury as an excuse” but who cares. I know what i’ve been through and i’m proud to be here!! The top picture is me in the PICU (pediatric intensive care unit) and the bottom is me, about 4 days ago! If you ever have thoughts that you can’t get back to your normal self (98%) you CAN. I lost all hope, but with dedication and GOD I AM HERE TODAY to help ANYONE who is going through what I experienced and still do go through on my rough days when I get down. I just had my check up angiogram for my 8 years, and it shows that my AVM is growing back. It will not be the journey I went on last time, but it will definitely be another journey to remember. I know it is very common for AVMs to grow back in younger people especially, but I just never thought it’d happen to me. But, I, and my family will get through it just like we did before!

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To highlight our impact and convey our mission with clarity, we are excited to announce that the Joe Niekro Foundation is now the Niekro Aneurysm and AVM Foundation. We look forward to building on the Niekro legacy and continuing our mission!
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