J26 — June 2009 — Myasthenia Gravis Surgery

Intro: A living nightmare. That's how the woman you're about to meet describes her experience with a rare disease called myasthenia gravis. The condition caused her to become so weak she couldn't walk, talk or swallow. After seeing several doctors, she ended up at Mayo Clinic where medication and a minimally invasive approach to surgery helped her regain her strength and her life.

TO SAMANTHA MONKEMEIER, A WALK IN THE WOODS IS AN AMAZING GIFT. (LAUGHTER)

SAMANTHA HAS MYASTHENIA GRAVIS. A CONDITION THAT CAUSES HER MUSCLES TO BECOME VERY WEAK.

"THE FIRST THING THAT HAPPENED WITH ME WAS I LOST MY SPEECH. THEN I COULDN'T SWALLOW. MY LEGS WOULD JUST GIVE OUT."

"MYASTHENIA GRAVIS IS AN AUTOIMMUNE DISEASE OF THE MUSCLE, AND IT'S CAUSED BY ANTIBODIES IN THE BLOOD ATTACKING THE MUSCLE AND DESTROYING THE CONNECTION BETWEEN THE NERVE AND MUSCLE."

DR. BRIAN CRUM SAYS IT'S NOT CLEAR WHY THIS HAPPENS, BUT IN SOME PATIENTS THE CONDITION MAY DEVELOP IN PART BECAUSE OF A SMALL GLAND CALLED THE THYMUS. MEDICATIONS SUCH AS STEROIDS CAN REVERSE AND CONTROL SYMPTOMS, AS THEY DID FOR SAMANTHA. BUT ANOTHER OPTION IS TO REMOVE THE THYMUS GLAND. DURING THE TRADITIONAL OPERATION, DOCTORS ACCESS THE THYMUS GLAND BY SPLITTING THE BREAST BONE. BUT DR. STEPHEN CASSIVI USES A MINIMALLY INVASIVE APPROACH. FIRST HE MAKES A TWO TO THREE INCH INCISION IN THE NECK. THEN HE PLACES A SPECIAL RETRACTOR THAT LIFTS THE BREAST BONE, ALLOWING ACCESS TO THE THYMUS, WHICH IS UNDERNEATH THE BREASTBONE. WITH SPECIALIZED TOOLS AND A VIDEO SCOPE, HE THEN REMOVES THE ENTIRE THYMUS GLAND THROUGH THE SMALL INCISION.

"WHEN YOU REMOVE THE THYMUS GLAND, IT'S NOT AN IMMEDIATE EFFECT. IT TAKES TIME FOR THE BODY TO WASH OUT THE EFFECTS THAT THE THYMUS GLAND WAS HAVING."

SAMANTHA HAD THE SURGERY AND IS IN THE PROCESS OF WEANING OFF HER MEDICATIONS. HER HOPE IS THAT SHE CAN LIVE SYMPTOM-FREE WITHOUT NEEDING MEDICATION.

"I HAVE MY STRENGTH BACK."

FOR MEDICAL EDGE, I'M VIVIEN WILLIAMS.

Anchor tag: Dr. Cassivi says there is no cure for myasthenia gravis, and surgery doesn't work for every case. That's because sometimes there are other factors causing symptoms. But most patients do get better after surgery. And Samantha says it was worth it. She's already off some of her medications.

After months of not knowing what was happening to her, Samantha says she entered her symptoms in mayoclinic.com's symptom checker. Then she contacted the Clinic for help.

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