Hello all,
I am Khal, a university student and former MMA fighter. I was diagnosed at 19 years old with a “medium-large” AVM (3.5cm x 1.7cm) in my brain, specifically the right motor cortex region.
Even after my initial diagnoses of the AVM I managed to hold my Canadian national title as a MMA fighter for a year, mainly because it was not really made clear to me exactly what an AVM was and to what extent the damage my specific AVM could do, (which was a lot!).
The initial diagnoses came when a Ear-Nose-Throat (ENT) doctor ordered an MRI for me for my inability to smell, something I considered a near-life long disorder. He believed initially that pressure in my brain developed after a life-long habit of getting knocked around from training and other rough sports such as rugby and football that I participated in and put pressure on my ol-factory receptor. He wasn’t far off when the results came in with my AVM.
My next step was to get myself a permanent family doctor that knows the ins and outs of my medical history, a decision that would save me possibly years of heartache in the future, and to anyone planning their next steps, I highly recommend doing something similar. I was then referred to a neurologist, where I received the typical treatment, first a CT, then an MRI then I got to meet a radiologist who explained the options of what to do next, where he of course highly recommended gamma knife radiation.
It was about a year in before I finally met my neurologist face-to-face, where he finally explained to me the extent of my AVM. It’s hard to admit but this is when the stress of the situation got to me, my grades began to drop because of the reinforced idea of impending doom that I was starting to feel. It was either face life-long paralysis, death, or do something about it. Soon after, I decided to receive the Gamma-knife treatment. Initially they wanted to do two separate radio-surgeries, however when the time came and I had the CT scan before the operation, they decided that they could do one larger radio-surgery altogether. Honestly the worst part of that day was all the people I was set to sit with there who would just stare at me while I had this large frame installed into my skull. The wait was about 13 hours before I had my surgery, which was hard to tell exactly how long I was in there for, but it was less than an hour, they even played AC/DC for me while they operated. It was very smooth and I have no complaints about the operation itself. Having the frame screwed in felt like popping a stubborn zit, however, as clearly Indicated, I have a high pain tolerance.
It was only after this operation that I stopped competing in MMA, although I did still train rather aggressively. A decision I would come to regret over the next two years.
Everything went rather smoothly for the first 6 months, but subtly I began to notice mild paralysis in my back trailing down my tricep, minor drop-foot along with an increase in migraines. At first I would pay it no mind because I have been afflicted with migraines all my life, and I just thought If I toughed out the paralysis it would eventually go away. My tone quickly changed when my migraines got so bad I was throwing up every time I got one. I remember a specific moment where I was in the middle of doing chin-ups and I threw up all over myself and I decided to go to the doctor, not for my own personal safety, but so I would not ruin another pair of good shoes. It was good that I did go because it was a sign of swelling from the radio-surgery and I was immediately prescribed Dexamethasone.
The Dexamethasone did wonders to suppress my symptoms, but little did I know that the medication I was taking did not help swelling, but just suppressed the symptoms in of itself, therefore I could not tell whether or not I was getting better or worse. The answer was definitive in October 2019.
I suffered two seizures in one day, my neurologist would later refer to it as a “doctor-induced mini stroke” for reasons I will refer to later. My AVM had not only one aneurysm residing within it, but three. As expected all three bled, and as expected, my brain reacted. From October to January I was paralyzed throughout my entire left-side, and I mean that in the most literal sense, the only thing I could move was my elbow. Within those few months, in combination with inactivity and heavy medication I went from 190lbs, 6% body fat to 275lbs and I don’t know the body fat percentage, I was too afraid to check. The sudden weight gain caused stretch marks so painful that my skin would tear at the seems, I would bleed and it sucked almost as much as the paralysis.
It isn’t all bad though, my AVM never really activated until after the surgery, even then it never fully ruptured. With help of physiotherapy I managed to get back onto my own two feet again, and as of June I am breaking into full on sprints. Ironically, it’s hard for me to walk down hill then it is for me to sprint, it’s all in the ankle stability I suppose. I managed to lose the majority of the weight I gained, peaking at 275lbs I’m managed to hit 200lbs the other day at 11% body fat. I like to think my experience as a personal trainer and my do-or-die personality had a large effect on my current track to recovery.
I have a lot of stuff going on in my life that is addressed in this forum and I am truly grateful that my fiancé found it for me. I truly thought I was alone because the sensation i feel from overstimulated, or lack of stimulation in my nerves, the pain, the struggle, I was starting to think I was just a big baby, or that I was just truly alone.
I want to thank everyone for accepting me into this community and I will be sure to remain active, ask as many questions and answer as many questions as I can while I am here.
Although my AVM changed my life, as of now, I would like to think it was changed for the better.
Thank you.
Khal
