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The rib bone’s connected to ...

Homer college student undergoes surgery for rare medical condition and keeps her rib as a souvenir

Posted: May 8, 2013 - 5:09pm
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Marissa Paul shows her rib after she cleaned it using Lee Post’s instructions.

In a photo on her Facebook page, Marissa Paul, a 2011 Homer High School graduate, holds a shiny curved bone. It looks like the kind of bone beachcombers might find along Kachemak Bay from a moose or bear. 

Paul, however, got the bone from a place closer to her heart — about six inches up toward her shoulder bone.

It’s her rib.

The clean, white rib is a souvenir of a grueling surgery Paul, 20, went through in March, and a symbol of a set of coincidences that linked Paul, her St. Louis, Mo., surgeon Dr. Robert Thompson and Homer bone expert Lee Post.

Paul’s medical adventure started on March 11, a week before her 20th birthday, when after reclining in a chair at her grandparents’ home in Marissa, Ill. — yes, she’s named after the town — she noticed her left arm had become discolored. Paul is a sophomore at Southwestern Illinois University, Belleville, where she’s studying to be an occupational therapist, and lives with Melvin and Joanne Paul at the seven-generation family farm where her mother, Rebecca Paul, also of Homer, grew up.

Paul told her grandparents something didn’t seem right with her arm. Her boyfriend accused her of being dramatic, she said.

“Then the next morning it was definitely swollen and definitely purple, and everybody was, ‘OK, you’re right,’” she said.

Her grandparents called their physician, Dr. Russell Coulter, a family friend and Rebecca Paul’s cousin. Dr. Coulter did an ultrasound and found a blood clot near her shoulder. He slapped her on Coumadin, a blood thinner, and sent her to Sparta Hospital in Illinois. 

A few days later she went to Belleville Memorial Hospital, where doctors tried to remove the clot and open up the vein with a catheter snaked up inside her vein. That didn’t work and she then went to see Dr. Thompson at the Washington University Center at Barnes-Jewish Hospital, St. Louis.

His diagnosis? Thoracic Outlet Syndrome, or TOS, a rare medical condition that affects 1 in 50,000 people and often hits athletes, particularly professional baseball pitchers. Its symptoms include pain, tingling and numbness in the neck, shoulder, arms or hands, caused by compressed nerves in the neck and shoulder. One form of TOS, venous, the kind Paul has, can cause blood clots in the veins and can be life threatening.

“Thoracic outlet syndrome is a unique condition where the blood vessels or nerves are pinched in the base of the neck behind the collar bone,” Dr. Thompson said.

“Basically, it was between my collarbone and my first rib,” Paul said of the affected vein. 

Blood thinners can treat the clots, but would need to be taken for life and require periodic testing. Coumadin, a common blood thinner, often is taken by elderly people to prevent or recover from strokes and other heart disease. Because Coumadin can cause fetal birth defects if taken by pregnant women, if Paul stayed on it she could never have children, her mother said.

Paul chose surgery.

The head of the Washington University Center for Thoracic Outlet Syndrome at Barnes-Jewish Hospital, Dr. Thompson only does TOS surgery, said Nicholas McLaren, public relations manager for Barnes-Jewish. In one year he performed 130 such surgeries. His office wall includes baseball jerseys from some of the more than 60 athletes he has treated, including Colorado Rockies pitcher Aaron Cook.

The eight-hour surgery involved several procedures: cutting the first rib, the rib at the top of the rib cage connected to the first thoracic vertebra, away from surrounding muscle and tissue; removing the rib; repairing the collapsed vein using a donor vein; and temporarily rerouting a vein in to an artery Paul’s arm at her wrist so more blood will pump through the repaired vein and help it heal better. That connection, called a thrill, pushes blood so fast Paul said you can feel it buzzing.

Before the surgery, Thompson told Paul if she wanted, she could keep the rib. She said yes.

“We have found over the years patients really enjoy receiving the specimen of the first rib that we’ve removed, I suppose as a visible symbol of the cause of their problem,” Dr. Thompson said.

One college baseball player who had the surgery puts his rib in his back pocket when he pitches.

“No one can believe they actually gave it to me after the surgery,” Paul said.

She got the rib in a sealed plastic bag that still had a bit of tissue on it.

“I thought it was kind of cool,” Paul said of seeing the bone that had once been inside her body. “My uncle was there and he was kind of grossed out about it.”

To clean and preserve the rib, Dr. Thompson gave Paul and her mother some instructions that his patients had used with success. “‘The guy we got the instructions from is from Alaska,’” Paul said Dr. Thompson told her. “‘Oh, he’s from a place called Homer,’ and we said, ‘OK.’ My mom was like, ‘Lee Post, I know him.’”

Post, known as “the Boneman” for his work cleaning and articulating animal bones, most recently organized the articulation of a gray whale skeleton now on exhibit at the Pratt Museum. He has written a series of manuals guiding people through cleaning and preparing bones, available on his website, theboneman.com. This month he’s the skeleton preparer in residence at the California Academy of the Sciences, San Francisco, where he’s part of a living exhibit where people can watch him and a team articulate a killer whale skeleton.

Lee said Paul’s story was the first time he’d heard Barnes-Jewish Hospital patients used his instructions to clean rib bones. A few years ago the mother of a ballerina student had found Post’s website and wrote him about how to preserve a her daughter’s rib from TOS surgery. She had put the bone in bleach — a bad idea — and almost ruined it. Post advised her on how to save and preserve the bone. 

“It was a random desperate act of who could give her some more information,” Post said of how the mother found him. “Because this worked, she shared the recipe with the doctor in case somebody wanted to save the bone.”

Post said Dr. Thompson’s patients are the only people he knows of who have used his method to preserve human bones. The technique involves first soaking the bone in ammonia to remove tissue and fats, next soaking it in a hydrogen-peroxide solution to bleach it and finally in Mop ’n’ Glow or floor wax to coat it. 

There were a few more serendipitous events in Paul’s recovery. The surgery happened at spring break for Rebecca Paul, who works for the Kenai Peninsula Borough School District, and she had planned to visit her daughter and parents anyway. The nurse assisting the anesthesiologist at Paul’s surgery has a cousin from Alaska, he told her — Carmen Field, living in someplace called Homer. 

“There are lots of little things along the way that fell into place,” Rebecca Paul said. “Such a small world.”

Marissa Paul will get outpatient surgery in June to disconnect the “thrill” vein in her wrist. Her planned return to Homer this summer to work at Captain’s Coffee will be delayed until July. With physical therapy, Paul should have a complete recovery.

“It’s like making lemons out of lemonade,” Rebecca Paul said of her daughter’s surgery. “She becomes the poster child for Barnes-Jewish and increasing awareness of TOS. That’s the lemonade for her.

So what will she do with the bone?

“I don’t know,” Marissa Paul said. “I’ve had a lot of suggestions. I’ve had people say, ‘scrimshaw it, scrimshaw it,’ but what am I going to put on it?”

Michael Armstrong can be reached at michael.armstrong@homernews.com. Nicholas McLaren, public relations manager at Barnes-Jewish Hospital, St. Louis, contribute to this article.

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