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Hi all. My name is Jennifer and I’m 17 years old.
March 2015, I had decided to get an MRI for chronic migraines I had been having. We found nothing related to migraines. We did, however, find a 3 cm AVM in my right cerebellum.
Being a 15 year old, high school freshman, I was scared to death. My parents and I met with a doctor and after looking into my options we decided to have surgery.
I had an angiogram and 2 embolizations to cut off the blood supply going to my AVM. On April 22, 2015, I underwent brain surgery.
During my surgery, my anesthesia tube wrapped around my tongue. In post-op, my tongue began to swell and take over my entire mouth. I wasn’t immediately intubated and put into a medically induced coma for 5 days. Not only that, I lost coordination and balance on my entire right side.
After being in the hospital for 10 days, I had to relearn how to walk, write, talk correctly, etc. More than 2 years later, I still cry often about my struggles with my recovery. I have gone to countless of doctors, occupational therapists, physical therapists, and speech therapists.
My surgery site has caused me pain since my surgery. I’ve tried acupuncture and many, many medicines. Two months ago, I had some metal plates removed hoping to relieve my pain and only causing it to get worse.
Most of my struggle isn’t the physical part of it all, but the emotional part. I had brain surgery in high school. None of the people around me understand. My doctor told me I’d be entirely recovered in 1 month. It’s been over two years. I have nightmares and try to bottle all of my feelings up because nobody understands but it just makes everything worse. My therapist helps but since she hasn’t had an AVM, it’s hard for her to relate and she knows that. I feel lucky that we caught it before it ruptured and to be living but I have such a hard time with every aspect of my surgery.
Any comments or advice?
Thank you
Jennifer