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AVM Survivors Network

Still cannot believe this site is real! Here is my story, it’s interesting, I promise!

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

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Welcome to the site, and yes we are real! Yes that is quite the story! I’m a couple provinces over in Manitoba. I had a bleed in 2016 at 48 and discovered I had an AVM and what one was, Gamma knife and now gone. I hav another MRI in a little less than a year just to do an in case check but neuro said “exceptionally rare” at this point. I sure hope so.

I enjoyed the MMA piece. I never fought MMA, but did do a fair bit of training, mostly Brazilian jui jitsu and no gi stuff. Trained with some really great guys, ended up in Brazil in 2002 to compete. Was a lot of fun and great exercise. Haven’t done it for years now, been tempted but not nearly as “bendy” as I used to be.

Its great you’re here, a great group with a lot of experience, and many who have been in some incredible battles with AVMs as survivors and care givers. Being a fighter you would certainly understand! Take Care, John.

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You are definitely very VERY brave to have experienced all that! I, myself could very much relate to when your Migraines were getting so bad and severe and it turned out to be swelling.

I have had quite of a rough journey with stubborn swelling. I became so unravelled in dexamethasone and how it really did surpress my awful M symptoms. For me, all I cared about was having the ‘quality of life’,meaning quite guiltily I could say I didn’t mind how the AVM itself was, but I cared more about the AWFUL symptoms it imposed on to my daily life. I still have scars on my body and my legs especially from the usage of the steroids. But for the time being, my doctors have repelled from the use of it. I am now heavily relying on the use of ‘preventatives’ and painkillers to deal with the symptoms and at the same time to help with the changes in the brain and tissue.

I am so glad you are able to have shared your experience and pain with us here at the community. and as you say I surely do believe your life-changing experience did happen only for the better!

Welcome to the community Khal! :raised_hands:

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Thank you all for the kind words!

@JD12

Thank you again! I am glad the gamma knife was effective for you! I hope your MRI goes well! If you have any other stories about your brazillian ju jitsu days I would also be interested in hearing about that too! Going to Brazil for Ju Jitsu is big news!

@VolunteerRoshan

Thank you so much! I am sorry you can relate to something so tedious such as migraines and the Dexamethasone. I had a very similar thought-process as you when it came to Dexamethasone in terms of alleviating symptoms. I too have switched to painkillers while my brain goes through changes.

Again, thank you all for the support and for welcoming me to this community!

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Perfectly normal.

Like John, I was about 50 when my dural arteriovenous fistula started to show itself. Like you, I was referred to an ENT guy initially (because I could actually hear the blood whooshing from artery into vein) but I had worked out before I got to see him that I had an AVM, using dear Dr Google. The ENT consultant plotted over my head with a stethoscope and finally landed on the back of my head where the noise was greatest. He just stopped moving. Didn’t say anything. Rang a colleague (who didn’t answer but who I assume was in neurology or neurosurgery). Then told me “Well, Mr D, you’ve got what we call an AVM”. At that point, the bottom dropped out of my world somewhat, as it does for all of us.

So, welcome! It’s a good place to be and to share with others and seek a bit of support of whatever kind you need. And we should feel free not to be macho about it at all.

It’s great to have you join us. Very best wishes,

Richard

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Hi Khal. You are amazing. I’m going to share your story with my son, Jake who is 18. He suffered an AVM rupture 1.5 years ago with full right side paralysis. He’s a fighter (not MMA, thank goodness but you know what I mean - I’m a Mom.) and is now walking with a limp, some use of his hand and arm. We want him to believe he can fully recovery and one day run. Thank you for sharing your story as I know it will inspire him. Congratulations on your recovery and many blessings.

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Hi Khal,

Welcome to the family and hope all is well with you and your onto a speedy recovery… prior to my AVM I was active in boxing and also did many years of Hapkido with no knowledge whatsoever I had this ticking timebomb in my head, until a CT confirmed it was there after headaches from the gym… I was 30 at the time I was diagnosed and like you felt I was alone and had no one to turn to… after my removal via surgery, which was pushed due to a bleed I suffered 1 month after diagnosis, I found this place and it has helped with my journey as you can imagine… I love helping others with positive vibes who are going through this struggle cause I know what its like first hand.

As time passes every decision you make now will revolve around whats happened and the AVM… its human to do so and even though it is a slow process I can assure you there is light at the end of the tunnel man… be smart and play it safe champ and know we are here for you… God bless!

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You are SO not alone! And the people here get what you are going through: they’ve been there too.

Stay well!

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Hi Khal
Thank you for sharing your story. I have a left frontal lobe AVM near the motor cortex so probably the opposite side to yours I think. I was offered surgery but haven’t had it as yet. I had one seizure and thats how they found it so for the past five years I have been on Keppra. I have ups and downs probably due to the Keppra but I am too afraid to change. The seizure meds all seem to have side effects. Anyway this site is great and you will find lots of support and info on here. Main thing is to keep positive and keep going:) Carol

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