STUDENT TO UNDERGO RARE SURGERY : DOCTORS HOPING TO SHRINK VESSELS BEHIND BOY'S FACE.Byline: Mary Schubert Daily News Staff Writer February could be one of those turning points in Jonathan Willett's life. He will mark his first double-digit birthday, and will undergo a rare and risky treatment that could restore his health. The fourth-grader at Stevenson Ranch Elementary School has a rare condition called arteriovenous malformation Arteriovenous malformation An abnormal tangle of arteries and veins in which the arteries feed directly into the veins without a normal intervening capillary bed. , AVM AVM 1 Acute viral meningitis, see there 2 Arteriovenous malformation, see there for short. Doctors hope a combination of an experimental surgery and a form of radiation can correct an abnormal tangle of blood vessels Blood vessels Tubular channels for blood transport, of which there are three principal types: arteries, capillaries, and veins. Only the larger arteries and veins in the body bear distinct names. massed behind Jonathan's face that could hemorrhage without warning. A few weeks after Jonathan marks his 10th birthday Feb. 2 - probably with a trip to Six Flags Magic Mountain Six Flags Magic Mountain is an amusement park located just west of the Valencia neighborhood of Santa Clarita, north of Los Angeles. It opened on Memorial Day weekend on May 29, 1971 as Magic Mountain, by the Newhall Land and Farming Company,[1] with four friends - he is scheduled to undergo the rare procedure at USC An abbreviation for U.S. Code. University Hospital. Two staff doctors, neurosurgeon neurosurgeon a physician who specializes in neurosurgery. neurosurgeon A surgeon specialized in managing diseases of the brain, spine and peripheral nerves Meat & potatoes diseases Brain tumors, spinal cord disease Salary $245K + 15% bonus. Steven Giannotta and radiologic interventionist George Teitelbaum, will use a device called a gamma knife Gamma Knife A trademark for a radiologic nonsurgical device used in stereotactic radiosurgery. Gamma knife A surgical tool that focuses beams of radiation at the head, which converge in the brain to form a lesion. to perform a procedure called an embolization embolization /em·bo·li·za·tion/ (em?bo-li-za´shun) 1. the process or condition of becoming an embolus. 2. therapeutic introduction of a substance into a vessel in order to occlude it. , respectively. Since birth, Jonathan has had a reddish mark on his forehead, located between his eyes, that his family and physicians all thought was a birthmark birthmark, pigmented maldevelopment of the skin that varies in size, either present at birth or developing later. Birthmarks may appear as moles (melanocytic nevi) that vary in color from light brown to blue, and are either flat or raised above the surface of the . A year and a half ago, however, they learned that Jonathan actually had AVM, a life-threatening illness that usually attaches itself to a patient's brain but in the boy's case is lodged behind his face. If the engorged en·gorge v. en·gorged, en·gorg·ing, en·gorg·es v.tr. 1. To devour greedily. 2. To gorge; glut. 3. To fill to excess, as with blood or other fluid. v.intr. blood vessels were to be removed from his sinus cavity, from behind his left eye and down to his lips, Jonathan's face could be severely maimed maim tr.v. maimed, maim·ing, maims 1. To disable or disfigure, usually by depriving of the use of a limb or other part of the body. See Synonyms at batter1. 2. in the process. Last year the boy underwent two surgeries that left his nose disfigured dis·fig·ure tr.v. dis·fig·ured, dis·fig·ur·ing, dis·fig·ures To mar or spoil the appearance or shape of; deform. [Middle English disfiguren, from Old French desfigurer , said his mother, Kelliann Willett. The AVM measures about 11 centimeters and is growing, Willett added. In the embolization that Teitelbaum will perform, the arteries that feed Jonathan's AVM will be plugged up with cyanoacrylate glue cyanoacrylate glue tissue adhesives used for treatment of minor wounds and abrasions, vascular and ophthalmic surgery, and hemostasis. , a substance that hasn't been approved by the Food and Drug Administration. ``It will set up and harden in the stream of flowing blood; it's used to block blood vessels,'' Giannotta said. If blood can't flow to the AVM, doctors reason, its size will shrink. The glue, which is available in Canada, can be used in the United States with a patient's permission - but only as long as the person accepts the risks of using a substance not regulated by the federal government, Giannotta said. Once the embolization operation is complete, the gamma knife procedure will be performed. The device, which Giannotta said ``looks like a huge football helmet,'' is equipped with a computer that pinpoints the precise location of the patient's arteriovenous malformation. ``The patient wears a special frame that allows us to locate the problem exactly on a scan,'' Giannotta said. ``The computer reads the location of the problem relative to a frame that's placed on the patient's head and gives us coordinates of where the problem is.'' Then 201 beams of cobalt are directed at the AVM. Giannotta said that the gamma knife was designed to treat AVMs of the brain, and using the device to treat a facial AVM is much more rare. Unlike cancer patients who undergo radiation treatment, people with AVM typically don't get sick from the gamma knife procedure because the radiation is directed only at the problem area and doesn't hit any healthy tissue. ``He won't have any of those side effects Side effects Effects of a proposed project on other parts of the firm. of the radiation,'' Giannotta said. In fact, Jonathan likely will be awake for most of the procedure. ``He probably will be watching television while we're doing this,'' Giannotta said. AVMs of the brain, Giannotta estimated, probably occur in one-half of 1 percent of the population. He didn't know the frequency of facial AVMs, but said Jonathan's type of arteriovenous malformation is ``quite rare.'' If left untreated, the AVM ``recruits'' more blood vessels to its swollen mass, heightening the danger if it should rupture. ``He could bleed to death out of his nose,'' the doctor said. Willett and her husband, Steve, also have an eighth-grade daughter, Katie, 13. Jonathan's medical problems have drained the family's savings - even though health insurance generally covers 80 percent of the costs - and have monopolized their time, Willett said. ``I have spent a year on the Internet, contacting every doctor and reading every book,'' she said. ``I took close to a six-month leave from my job and have done nothing but focus on trying to find something to cure him.'' The Willetts realized something was wrong with their son in August 1995, when Jonathan tripped while running around the house, apparently rupturing the previously undetected AVM. ``He fell and hit the coffee table right smack on the bridge of his nose,'' she said. The swelling persisted, and as the days and weeks passed Jonathan began having frequent headaches, nosebleeds, dizziness and trouble breathing through his nose, Willett said. Because of his health problems and surgeries, Jonathan is only in school about 70 percent of the time. But he said he loves all his subjects, especially reading and science, and his classmates Classmates can refer to either:
In fact, last spring when he underwent surgery in Boston, his classmates mailed him homemade get-well notes. ``They sent me a whole bunch of cards that took us like two hours to go through all of them,'' Jonathan said. He said he's ``excited'' rather than nervous about the Feb. 26 surgery and gamma knife procedure because of its potential to cure him. Although doctors caution the Willetts that Jonathan shouldn't engage in rough-and-tumble activities, his mother said they allow him to ride his bike and go on roller coasters because he loves them so much. ``I just decided to let him be a regular little boy,'' Kelliann Willett said. When Jonathan interjects that he wants to go on Magic Mountain's new bungee-jump attraction, his mother quickly nixes the request. ``He would love to play soccer, but I can't take a chance that someone will kick a ball really hard and hit him in the head,'' she said. ``I'm terrified ter·ri·fy tr.v. ter·ri·fied, ter·ri·fy·ing, ter·ri·fies 1. To fill with terror; make deeply afraid. See Synonyms at frighten. 2. To menace or threaten; intimidate. of losing him and what could happen to him, but he's very sure God and the angels are looking out for him.'' CAPTION(S): Photo Photo: (color) Jonathan Willett will undergo surgery in February to remove an abnormal tangle of blood vessels behind his face. John Lazar/Special to the Daily News |
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