Okay, here goes. I have been asked by readers about the full extent of my condition, how it happened, etc. It’s a painful thing to address and recall, but I realize it’s also good for me to talk about it. Plus, while it bores me, people seem fascinated with my story. (You'd be surprised how many new readers I get after I talk about my ordeal; if I'm stuck with this disease, then I'm gonna exploit the hell out of it).
Cavernous himangiomas of the kind I have are classified as a “rare disease.” Of the percentage of people who have angiomas of the brain (which is a small percentile) only 1% of this group have them on the brain stem like me. READ: I am super special. Unbeknownst to me, I grew up with something that resembles a raspberry on my medulla. When I was in Australia and discovered I had this condition the doctor at the Prince of Wales hospital told me to just let it shrink. He was a great neurologist, the best in Sydney apparently, but I was the first case of cavernous himangioma he had come across in his long career, so I can’t blame him for not knowing exactly what route to take. We were both in the dark.
About me: Before all the problems began I was a very active guy. I’d never spent day one in the hospital, and was never on my butt inactive for more than an hour (those hours being courses). I loved to travel and experience other cultures and meet new people. (I need to have someone with me when I fly now, because it’s just too much for my vertigo.) I was also an amateur bodybuilder, all natural. That was a mistake...I should have juiced up till I was as big as a house. What? WHAT?? Don't look at me like that.
In the winter of 2003 I was tackled by an intoxicated (some might say, closeted) acquaintance at a party and fell backward, hitting my head on the corner of a brick wall. It was only a few weeks later, when I was in grad school in Australia, that I noticed significant weakness in my right side, nausea and a strange disorientation and imbalance. I was unNERVED to say the least. Get it? Un-NERVED...Hehe.
At Prince of Wales I had a CT scan and was told I had cavernous himangiomas. (By the way, when I went to pay for said scan I was told it was going to be expensive and I was then handed a bill for...are you ready for this? ...$250. I nearly wet myself in excitement! 250 for something that in the States would cost thousands.) My father, a brother and a sister also had/have this condition. My father passed away from a stroke in 1993 around the time himangiomas were just being differentiated from MS. (There is still not a great deal of study on the condition.) I knew I was susceptible to it, but, perhaps in denial, I wanted to think my deficits were from the fall I had. A brain bruise or something that would clear. (One of the many doctors here in the States told me just that; another said my imbalance was caused by an inner ear infection and put me on antibiotics. Morons.)
My brother and sister have their angiomas elsewhere in their brains. These used to cause them seizures, but are now under control with meds. I have never had a seizure and have never taken any medication for the himangiomas.
I flew back to the States and got better through physical therapy, though I never seemed to fully recover. The imbalance and weakness were ever present, and the symptoms varied in magnitude from day to day. I had another serious brain bleed over the next couple of years and had even more therapy. Finally, in August of 2005 I found I was having a hard time breathing, walking, jerkin' it, or doing much of anything. I was moved out of my apartment and back to my childhood home. In a matter of two weeks I had gone from getting around on my own to having to use a wheel chair with very little use of my arms and legs. My doctors at the Mayfield Clinic in Cincinnati, Ohio told me it was either immediate surgery or death. I told them I'd get back to them. Two days later I had brain surgery. They resected 90% of the himangioma that was strangling my medulla like Joan Crawford on Christina, leaving the remaining 10% only because when they touched it my legs moved a little. They didn’t feel comfortable with taking that bit out. There was a tiny hole placed in the surrounding region so that when it did bleed again (which it has) the blood wouldl escape into the rest of my body and not cause any huge problems. I have 4 other himangiomas in other areas of my brain, but I am told they are calcified and pose no danger. Pussies.
My recovery was much quicker than anyone expected. I went into a rehab hospital in New Albany, Indiana but they were doing nothing for me. (Seriously. I was out of bed at the most half an hour a day.) So, in three weeks I checked myself out; a week after that I was walking; a month after that I was back in the gym. When I went for my checkup two months post-surgery the doctors were astonished at my recovery, having told me at the outset I would most likely be in a wheelchair for up to six months. I felt like quite the superstar in the office. Every time I would get ready to leave with my mom (I still don’t drive, another casualty of this experience), the doctors would bring someone else in to see my recovery.
I have been such a huge fan of fitness since I was a teenager, I’m sure that had something to do with the speed of my recovery. Still, I am told that it can take up to ten years for a complete recovery from surgery. Then again, I might never recover completely. There go my dreams of opening the first all male nekkid dance show in Macchu Piccu.
The surgery kept me alive, but it has not helped the deficits that the himangiomas caused. I’ve tried everything: reiki, acupuncture, cranio sacral therapy, and while they definitely have their merits, none has really helped me physiologically speaking. But I will continue to search. I'm like Indiana Jones that way. Just like him. I even have a whip...
But the experience has taught me a great deal as well. I am in a much better place emotionally and spiritually than I was when I was healthy. I have also accomplished quite a bit and found direction. Before “the fall” I had no real idea what I was doing with my life, and though I had always known I was a decent writer, I kept putting my novel-writing off for a later date. If the accident hadn’t happened I don’t know if I’d ever had done a thing about it. Now, I have a small but very loyal fan base who ADORE me. ADORE me!! And who can blame them, really? I am pretty adorable. I also think I’m more focused on the positive than ever before, and much closer to my family. Strange how that happened.
And as far as my symptoms go - the vertigo and weakness - well, they make for good character traits when I'm writing. And the want, the desire to be well again, that's something I would have never known if I hadn't had that fall. With it came empathy and compassion and one hell of a good sense of humor.