Nick's story

As dramatic as the resection of my brain tumor may have been, it was not the first time someone in my family has undergone life-saving neurosurgery. That distinction belongs to my son Nick, who more than 19 years ago had his own brush with cerebral catastrophe.

You’ll find below the commentary that I wrote for Diagnostic Imaging  about this event—a nightmare for any parent. I was unconscious on Aug. 5 when I was wheeled on the gurney into the OR at Providence Hospital, and thus oblivious to danger. Ellen and I, on the other hand, were only too aware of the risks involved in Nick's medical condition that day in May 1993 when he disappeared into the pediatric OR at San Francisco Children’s Hospital. I would sooner have a second brain surgery than ever experience that sense of helplessness again.


Ready for our road trip to Chicago
this last July.

By God’s grace, Nick sailed through surgery and made a speedy and complete recovery. Those who know him will vouch that this is a young man with not only a healthy brain but an exceptional mind. Nick’s was a story—almost forgotten until now—that ended happily for everyone. Our prayers that he would live to be a healthy, normal kid were answered.

I may be the medical editor in the family, but it’s my 3-year-old son Nicholas who knows something about keeping technology in perspective. When it was discovered some months ago that he had dural sinus occlusive disease and external hydrocephalus, the machine that made this diagnosis possible mattered less to him than the Barney video playing on the waiting room TV. Because he was sedated for each of his MR exams, he has never seen the device that makes the protons in his head all stand up like soldiers and do what they’re told. He loves to look at his MR angiograms, however, holding them every which way to see what sense he can make of what he calls “funny pictures.”

Funny indeed. Radiologists who have had a child of their own scanned for a serious illness know the special agony that comes with the collision of their personal and professional interests. I can’t read MR images much better than Nick, but I have had them exhaustively interpreted for me by neuroradiologists who know their stuff. At moments like these such esoterica as pulsing sequences and magnetic field strengths become meaningless. The miracle of a technology that can show a wrinkle of the brain inside a little boy’s head is nothing compared to the life of that boy himself.

Nick is approaching the point that I should request volume discounts for his diagnostic workups. He had three MRs and a DSA prior to the placing of a subarachnoid-peritoneal shunt, and will probably need MR studies at regular intervals into the future. The excess CSF that had accumulated inside his head is now draining. The clot occluding his right transverse sinus isn’t the kind that interventionalists want to mess with, but his condition appears stable. Nick is free to play ball, climb trees and just be a kid.

As he’s gone through diagnosis and treatment, my son has benefited from the connections my job affords me. We’ve had some of the best physicians in San Francisco consult on Nick’s case. Unfortunately, not all my questions have been answered. There’s an awful lot that remains unknown about intracranial venous disease on which MR angiography is just beginning to shed light. The neuroradiologists I’ve talked to are intrigued by Nick’s condition, but are stumped by its etiology and are reluctant to guess as to its potential outcome.

While fortunate to have access to top-flight diagnosticians, my wife and I have nonetheless been held emotional captives by what the scans have told us. Their power transcends their actual diagnostic content. Would we have pursued treatment, for example, had MRA not detected a lack of flow in the dural sinus? Is megacephaly in itself an indication for venous shunting? I’m haunted by these questions. Clinicians have been warned to expect the incidence and prevalence of diseases detectable by imaging to increase in the future. Intracranial venous disease is one of them. The radiology literature, which is nearly silent on the subject, should someday have more to offer those who see the kind of condition that Nick has.

As every radiologist eventually learns, medical images pack an emotional wallop when something unexpected shows up on the study of a loved one. An intellectual understanding of disease doesn’t prepare a person for that moment. As my son has taught me, there’s much more to imaging than meets the eye. It’s when imaging meets the heart that we can really talk about something meaningful.

I hadn’t thought about Nick’s original diagnosis—dural sinus occlusive disease—in years prior to rereading this editorial the other day. Once Nick was medically out of the woods, we as a family rarely looked back. It’s thus very interesting to me that a quick online search reveals that this is one area of medical investigation that MRI apparently hasn’t advanced. According to content that appears on Radiopaedia.org:

“The diagnosis can be difficult to make, even with MRI, due to the frequent artifacts of flow, and the enhancement of the thickened dura mater  and also potentially of the clot itself. Demonstration of normal flow in the sinus essentially excludes the diagnosis, however.”

It’s obvious that not everything in the brain has yielded to scientific inquiry. We remain half-blind visitors to this mysterious domain. Despite major advances in the diagnostic capability of MR technology, many frontiers of investigation remain for this otherwise amazing tool.

Two head cases enjoying the
splendor of the Grand Tetons

As I described above, we were fortunate to have had some exceptionally talented physicians involved in Nick’s care, most notably the pediatric neurosurgeon Dr. Mike Edwards. Ellen and I were determined to put ourselves in the best possible position for Nick to survive and thrive—and we succeeded.

I'm pushing 60, so while my prognosis is at least as dire as was Nick's, there is much less at stake. I have already lived a life. It's to my advantage, however, that we have learned from this earlier experience what it takes to make it through a jam involving neurosurgery. There's beautiful symmetry to the fact that Nick is now at home for a while and is actively participating in the decision-making of my care. He's a brainy kid who has come through a brain crisis of his own to be with his old man when he needs him most. He's on my team and I can't imagine anyone more qualified to be there.