Posted: Wednesday, April 16, 2008 12:00 am
Test found tumor five years ago, but results not disclosed until recently
By Rachel Beck, Lebanon Express writer
Most Oregonians wouldn't mind going to sunny Southern California this time of year. But Rebecca Weed of Lebanon recently traveled to Beverly Hills on a trip she wished she didn't have to take.
Weed, 34, underwent brain surgery at the Skull Base Institute at Cedars-Sinai Medical Center last week. It was a turning point, and hopefully a resolution to, a painful journey that began years ago.
Mystery symptoms
For about a decade, Weed suffered from strange ailments, including extreme weight fluctuations. Old photos show Weed with a bloated face and round body one year, a tiny, frail frame the next.
Five years ago, Weed was on a stool at her home when she fell backwards and hit her head on some dumbbells. When she regained consciousness, she and her husband, who had recently moved to Lebanon, drove to the Salem hospital.
Weed was given a CAT scan, told she had a concussion and to rest.
What Weed didn't know was that the CAT scan also revealed a small tumor in her brain.
In the years since that hospital visit, Weed has suffered panic attacks and excruciating headaches.
"It was like someone had an ice pick, picking at my head," she said.
Her symptoms worsened as time passed. She developed amenorrhea, uterine pain that radiated to her back, shingles on her face and in her esophagus.
Doctors tried vitamin supplements and narcotics, but the medications just seemed to make her sick.
Diagnosis
Finally, Weed found a doctor in McMinnville who ran a battery of tests, including an MRI, in January. The test showed a spot on Weed's pituitary gland. Further examination revealed pineocytoma, a complex cyst of the pineal gland. The MRI was done in Salem, the same hospital that ran a CAT scan on Weed in 2003. When the MRI report came back, it included the '03 report of the CAT scan, which said there was a cyst.
Why the original report was never brought to the attention of Weed or her doctor, no one knows. It's an oversight that Weed accepts, to a point.
"Everyone makes mistakes, but this one kind of makes me irritated," she said.
Her current symptoms include a short memory, personality changes, hot flashes, claustrophobia, panic attacks, agoraphobia, extreme weight changes, bloating, eyesight changes, a constant dull headache, stabbing headaches that come and go, ringing in her ears, uterine pain, motion sickness and difficulty sleeping.
Weed said doctors think she's had the pineal tumor for about a decade; it could have begun as a pituitary cyst that she had since birth.
"It was terrible to know that I had a brain tumor, but it was good to know they knew what I had and they could do something about it."
A treatment discovered
The measurement of the cyst on the 2003 scan was 3 x 4.5 x 3 mm. The January MRI showed the cyst at 10 x 7.5 x 7 mm. That left Weed looking at a craniotomy, an invasive surgery.
After Weed was diagnosed, her godmother in Washington called. She had just seen a segment on television about the Skull Base Institute, and Dr. Henry Shahinian's endoscopic brain surgery procedures. Weed got in touch with the institute and, despite never meeting any of the doctors face-to-face, prepared for the procedure with a lot of phone calls and tests at an Albany lab.
According to a press release from the Skull Base Institute, Weed's surgery used a technique involving a dime-sized opening behind her ear. Dr. Shahinian then inserted an endoscope "directly into the affected area to gain a panoramic view of the tumor, which he then resects safely and in its
entirety."
Traditional surgery for a pineal cyst would involve a team of surgeons and a "barbaric" ear-to-ear incision to make a large opening in the skull. Surgeons would then push aside the brain to get to the tumor.
The Skull Base Institute reports its methods produce "superior results, substantially reduced operative time and a shorter hospital stay," as well as "fewer complications and reduced recovery times."
"I don't think I could be in better hands, but I'm still scared," Weed said days before the surgery.
Costs mount
Weed has insurance that will cover some of the costs associated with the surgery, but she still wonders how the family will make it.
Her medications include Diazapam, a thyroid pill, Benedryl shots, Opana and Ambien. The bill is too high for her to take the amounts that have been prescribed, so she takes half the pain medication.
The procedure was to take place at Cedars-Sinai Medical Center in Beverly Hills on April 9. Staying in that location added to the costs already incurred as part of Weed's treatment.
Weed's trip was complicated when doctors realized she intended to drive, not fly, to and from California. They told her that after the surgery, she would be limited to about two hours of driving time per day. That meant the return trip would take far longer than the two days the couple had planned. Between the cost of a rental car and missed work for Weed's husband, Ben Weed, the expenses suddenly got even worse.
Weed's parents, who are retired, are staying at the Weeds' house to help out. They've also lent thousands of dollars for the surgery, which leaves Weed with a sense of gratitude, and guilt.
"I'm burning up all their money, and I feel terrible about it," she said.
The family's finances took a hit when Ben had a heart attack several months ago.
Ben is an auto mechanic, and though Rebecca says mechanics make good money, "they don't make enough to have a wife this sick and a heart attack all in one year."
Recovery
Weed was to get out of the hospital April 11 and then stay near the hospital for three nights.
Weed said before the surgery that her doctors anticipated that the surgery would alleviate most of her health problems. She's in for a good three or four weeks of rest, but head pain should stop almost immediately.
Doctors also told her she should expect to lose a lot of weight.
"I'm looking forward to that," she said with a smile.
The Skull Base Institute has named Weed a delegate for its procedures for the state of Oregon. In that role, Weed expects to travel around the state giving presentations to make people more aware of the institute and the work it does.
For more information on the Skull Base Institute, visit skullbaseinstitute.com.