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Pepperoni Pizza--Hold the Angiomas

 

From: "Jack Hoch" spamholio@comcast.net
Sent: January 21, 2005

My story began in August of 2001. Sorry, this is rather long, and probably boring. Too bad. ;)

The Pizza

We "splurged" by consuming a Dominoes pizza on a Friday night before my Naval Reserve weekend duty. At 3:30am, I was awoken by hiccups of all things! Pizza tends to dehydrate me if I don't drink enough water before bed, but never has it given me such vicious indigestion where I've woken up from a deep slumber. In general, I've never had a problem with hiccups. I've always been able to stop them using the breath-holding technique. These felt different, but I couldn't put my finger on it at the time. No matter how hard I tried, I couldn't suppress them. I failed to go back to sleep, and at 7am I was still hiccupping as I drove 50 miles to Andrews AFB near Washington, DC. to start my reserve weekend.

The hiccups finally quit after roughly 4 hours. I called my wife to let her know about the strange goings-on. I just thought I'd come through a hell of an indigestion episode. Well, at 11am, the hiccups started back up again and went on for another two hours. I was very perplexed. Little did I know the hiccups would continue on and off like that for roughly 18-20 hours per day, every day for 6 weeks.

The General Practitioner

I really didn't give going to the doctor a second thought at this point. Prior to this, the only time I'd spent so much as an overnight in a hospital was when I had my adenoids removed at age 3. Our family was due to leave on vacation for the Outer Banks the following weekend. Since the hiccups were still persisting intermittently (more "on" than "off"), I figured I needed to go see a general practitioner. I did so and was given a prescription for Baclofen, a muscle relaxant. 24 hours after starting that prescription, I noticed I seemed to be seeing double slightly, and I couldn't "lock on" to a fixed point at a distance. I quit taking the Baclofen right away. I hate meds to begin with (don't even take aspirin for headaches), so I thought the Baclofen was messing with my vision somehow. I figured I'd wait till I returned from vacation to pursue this further. What a dummy.

The Vacation

We take 2 cars down to the Outer Banks because we're taking too much garbage; with two kids in tow, that tends to happen. During the drive, I notice that everything in my field of vision is rolling up, and I can't stop it. The double vision is getting worse, and I'm still hiccupping, roughly 16 hours a day or more, 1 hiccup every 5 seconds. I'm also incredibly tired, and I'm getting a slight tingling in the right side of my face, as if someone put icy-hot on the right side of it.. I wasn't sure how I was going to be able to drive 7 hours back home in this condition. Somehow, I managed to do it safely. I looked like one of those bobble head dolls as I tried to synchronize my head with my field of vision movement. Other drivers must have thought I was nuts. I guess I was. Still, nothing was going to stop me from getting to the beach for my annual body-surfing escapades. Vacations come around rarely enough as it is, and I didn't want to let a few hiccups, double-vision, nystagmus, balance problems, and fatigue ruin it, no sir!!!

The Optometrist

So now I return to the GP and after a cursory neurological exam, which I passed, she refers me to an optometrist who gives me a prescription for new eyeglasses!!! I thought, this isn't gonna fix my problem, but I knew I needed a new prescription. Not only that, but my experience with the health care field is naught. I thought, these folks are well trained and have my best interests at heart, so I'll go with the flow. Hahahaha....Ergo, I get the eyeglass prescription filled and make a follow-up appointment with the optometrist. After he monkeys around with things for a bit, I tell him my vision field is still rolling up, and I'm seeing double. Finally he stops dead, looks right at me and says something I'll never forget, "Your problem lies behind the eye. It's most likely a problem in the brain." I was like...WHOA...!!! That's when I got scared.

He couldn't shuffle me out of his office fast enough after that diagnosis, but he did give me 3 referral suggestions to go see a neuro-ophthalmologist. A neuro-WHAT? So, I'm thinking, great. More time wasted with doctors and now I've got some kind of brain damage. What the hell...

The Neuro-Ophthalmologist

Of the 3 referrals he gave me, I chose a neuro-ophthalmologist at GW University Hospital in DC. What scientific selection process did I invoke to make this important choice? Eeeny, meeny, miney, moe....LOL...I had no clue.

Turns out I could not have made a better choice. Dr. Barrett Katz was unbelievably awesome. After a battery of tests, he used the "n" word: nystagmus. He suspected some kind of brain lesion. I had no idea what he was talking about, but he prescribed an emergency MRI of the head, w/ and w/o contrast.

I got that done and shortly thereafter I had a follow-up with Dr. Katz. Over that weekend I had done some internet searches on my symptoms and convinced myself that I had MS. I was ready for the worst when I returned to his office. He did in fact confirm a solitary brain lesion in the brainstem. He didn't say too much about it, but said at this point he couldn't help me with the vision problem. While he could prescribe Franzel prisms, the lesion was too unstable at the moment to worry about it. He walked me up to neurosurgery and personally ensured that I got a same day appointment to see the department chair.

The Neurosurgeon

So, now I'm sitting in the neurosurgery waiting room and thinking that I just turned 40 two weeks ago, the terrorists recently blew up the World Trade Center and the Pentagon (2 miles from my downtown office), and I have brain damage.

My neurosurgeon is supposedly brilliant and an accomplished surgeon, but he doesn't have the best bedside manner. There was no "hi, how are ya?" or "sorry you were waiting so long", or even an opportunity to introduce my wife to him. It was all business conducted in a foreign language I simply did not understand. He mentions the possibility of a cavernous malformation, an arteriovenous malformation, and a capillary telangiectasia. I couldn't even pronounce, much less spell, all of the iterations of these possibilities. I didn't even know what questions to ask, as I simply couldn't speak the language. I just asked him to spell out the terms for me. I knew the internet would help me unmask all of this stuff. It took me a good month to learn my cranial anatomy and familiarize myself with all of the medical jargon. Next thing I knew, I was cutting my teeth on neurosurgical research articles, sponging up all of the info I could absorb. It's amazing that process didn't incur additional brain damage (maybe it did--you be the judge)!

The Diagnosis & End Result to Date

One semi-uneventful cerebral angiogram later (my first), the official diagnosis came back as a 7mm cavernous malformation of the medulla oblongata. I was just glad it wasn't an AVM!

My lesion is in the core of the caudal medulla and does not abut a pial surface, so I'm currently not a candidate for surgery. Fortunately, I've only had the solitary bleed. Duration from initial symptom presentation to ultimate diagnosis was roughly 3 months. I was sleeping a lot and could no longer drive due to the visual field disturbances. I also had balance problems where I'd fall off to my left. The hiccups finally resolved after 6 weeks as did the nystagmus after 2 1/2 months or so. I still have some residual binocular diplopia, my uvula is still pulled to the right, and it takes me extra time to discern relative motion, especially when my head is moving. I have to be careful when entering intersections while driving, or using stairs as I approach the top of the stairwell to go downstairs. Every tennis match I play now has two tennis balls coming at me, not one. Just aim for center of mass!

I feel very fortunate to have recovered as much as I have. Given the location of my lesion, things could have been much, much worse. I eventually hooked up with Angioma Alliance based upon a casual internet search. One day Google just brought up this organization, and I found out they were fairly nearby in Williamsburg, VA. Since then I've joined the board and pretty much keep abreast of the latest research and try to distill it to a point where new patients can understand the entity with which they are dealing.

The other consideration in all of this was how a situation such as mine can be a true marriage-tester. There were other issues involving my oldest son with which my wife was dealing when I was struck down. Christine was an absolute pillar of strength through everything. I can't begin to count my blessings.

Regards,

Jack Hoch
Northern Virginia