20 April 1999
I'm a 41 year old professional and father of two.Last October, while taking my morning shower, I came down with asevere headache and a stiff neck. I thought it was a migraine, tooksome painkillers and tried to lie down and get some rest. But thepain persisted, and so that evening I went to an after hoursclinic. Seeing I had a fever as well, the doctor diagnosed a viralinfection and sent me home. I went to work the next day, but wasstill in a lot of pain. A second doctor, visited a few days hence,thought it might be a migraine, but was concerned enough to saythat if the painkiller he prescribed didn't do the trick, I shouldgo to the hospital. Well, it didn't, so the nextmorning, now five days after the onset of pain, I was driven to theemergency room of Toronto's Sunnybrook Hospital. They quickly did aCT scan, and moments later made the first, accurate diagnosis: Ihad an AVM on the parietal lobe of the left side of the brain, andit had bled. A follow-up angiogram confirmed that diagnosis. I wasadmitted to the hospital for a few days for pain management, andspent a week and a half out of work. I was lucky, in that there wasno neurological damage at all from this bleed, but understood thatit had to be treated.
After doing some searching around, I identified DrWallace at the Toronto Hospital (western division) as a topspecialist in cerebral vascular surgery. He ordered an MRI to get abetter read on the AVMs location. Fortunately, while it was on thedominant side of the brain (I'm right-handed), it was close enoughto the surface to be operable with what I felt was an acceptablerisk to my right field vision. After much fretting, I chose surgeryover the option of radiation, not wanting to wait through two tothree years while radiation kicked in, and with the radiation onlyhaving about a 70% chance of eliminating the AVM completely.
My surgery got cancelled once due to an emergency,and was finally done on March 10th. It was an 11 hour operation,which kept my wife and family waiting in suspense. But it went verywell, and when I woke up, the doctor was there and checked if Icould see and talk, and found that everything was just fine. Theonly real pain was on my side, where I had been lying still for 11hours.
There were, however, some post surgery surprises,good and bad. The good news came first: a post-op angiogramconfirmed the AVM was gone, I recovered quickly from theanesthesia, and I discovered, to my delight, that the doctor haddone the surgery without shaving my head. He shaves only a thinline, and the rest of the hair flops down after the operation andcovers up the incision. Three and a half days after surgery, Iwalked out the hospital and was driven home.
I had ignored the doctor's offhand warning thatthings could temporarily deteriorate later. They sure did. Ireturned to the emergency room twice over the next week, with aterrible headache, memory loss, and one day, a nearly completeinability to speak. The doctors assured me that all of these thingswould correct. And they did. A week and a half after the operation,I was back to normal. Three and a half weeks after surgery, I feltwell enough to return to work. I have one follow-up appointmentahead, and am looking forward to the day when the letters AVM areall behind me.
I had looked at this web site before my operation,and it had really scared me. I wanted to let anyone diagnosed withan AVM know that, if its not too large or badly placed, you canbeat this thing and emerge good as new.
Update 22 Nov 1999
I've been feeling 100% since getting back to workabout a month after my operation. I had my final appointment withthe neurosurgeons in October, and was given the all-clear to weanoff the antiseizure medication I was on since before the surgery(Dilantin). That weaning-off process ended last week, with no illeffects. Although one never forgets something like this, the wholething already seems like a long, bad dream, but one that now hasindeed had "A Happy Ending". Best of luck to all those who arestill facing AVM treatment and recovery, and hope everything worksout for you as well as it did for me.
Update 13 Aug 2001
Last Thursday, more than two years after my AVMsurgery and more than a year and a half after I stopped takinganti-seizure meds, I was hit by a full blown seizure while at work,having never had one either before or after the operation. I wokeup after 15-20 minutes with paramedics standing over me, and wastaken to the hospital. A CAT scan showed nothing (other than theevidence of surgery) and I was given a triple dose of dilantinintravenously, and put back on 300 mg of dilatin daily. I was alsobarred from driving for at least a year, maybe two. I have afollow-up appointment with my neurosurgeon this week, and I'mobviously very disappointed by this very late setback.
I didn't have any troubles with dilantin when Itook it for 6 months after the operation, but this time it seems tobe making me drowsy. I'm hoping that feeling goes away over time.Any thoughts from faithful readers? Any other recommendations forthings one can do to reduce the odds of another seizure? Is coffeeok? I'm back at work, but struggling a bit.
Update: 11 May 2002
I've so far had no repeat of my one,post-craniotomy seizure since last August, and no problemtolerating the Dilantin. But since as I understand it, the lesionthat caused the seizure (from either the operation or the earlierbleed) will never go away, and I might have to be on anti-seizuremeds forever. I've been reading into the longer-term safety ofdilantin (phenytoin), and haven't been too comforted by referencesin the medical literature to risks of cerebellar atrophy (brainshrinkage?) and bone loss. In contrast, my GP says this is a verywell-tolerated drug that people are sometimes on for decades.
Has anyone in your group discussed long termdilantin use with their doctor, particularly a specialist? If so, Iwould like to hear from them over what they heard about the risksthat I have read about, if anything.
Update: 9 Aug 2002
It's been one year since my seizure, and so far,the dilantin or good luck has warded off any repeats. I can legallyreturn to driving. But I've been mulling over the risks of howoften I want to get back behind the wheel again. First, I don'treally "know" that the medication is "working", since the firstseizure only happened more than two years after my craniotomy andalmost three years after my hemorrhage. So maybe I'm destined tohave a seizure every few years and the dilantin is doing nothing tostop it. One year seizure free isn't really that much evidence.
Second, I can't seem to find much specificliterature on the odds of remaining fully seizure free on dilantinafter having a seizure with a known cause, and then staying free ofseizures for a year. Some of what I have been able to turn up isn'treally that encouraging, seeming to suggest that a year of seizurefree experience still leaves the odds of a repeat over the next fewyears fairly high (e.g. 30% or even 50%). If so, why would it be soOK to go back to driving? Has anyone been more enlightened byeither their doctor or a specific study they've read on this?Anyone gone a year seizure free on meds and then had a relapse? Ifso, I'd appreciate an email.
Update: 30 June 2004
A quick and I hope final update on my AVMstory.
It's now three years since I had the one, isolatedseizure, and more than five years since I had my AVM removedsurgically. Thankfully, all is well. Although I continue to takeDilatin and carefully remember to do so every day, I otherwiseforget about the whole AVM experience. Although I know I'm at riskof a repeat "breakthrough" seizure for the rest of my life, its notsomething that I can do anything about by thinking about it, orchanging my behavior, so I don't think about it or limit myactivities in any way. At least for the last three years, andhopefully forever, thats been the right call.
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