A shoulder to prey onThere’s a disease that has a bone to pick with Brenna Nelson. It picked her shoulder.
By: Jo Colvin, Alexandria Echo Press
There’s a disease that has a bone to pick with Brenna Nelson.
It picked her shoulder.
Last December, Nelson, a 2007 graduate of Jefferson High School and the daughter of Shelly and Ryan Burgau of Alexandria, was playing a game of football with her family. After a blocking move, she felt her shoulder “crack” and she couldn’t move it.
An X-ray showed that Nelson had a mild shoulder separation. Over the next few months, just when she thought it was healing, it would feel like it tore again. Then she noticed something disturbing.
“My muscle was deteriorating; you could see this bony shoulder,” said Nelson, who now lives in Moorhead with her husband, Troy. “It was like my shoulder was wasting away.”
During a visit to Alexandria in July, she had on a bathing suit – and her mom was shocked.
“Your shoulder looks terrible,” she said to her daughter. “There is something wrong.”
An X-ray at Heartland Orthopedic Specialists in Alexandria showed what looked like a tumor or mass – possibly cancer. Her doctor suggested she go to the Mayo Clinic in Rochester – immediately. On the Fourth of July, Nelson headed for the Mayo Clinic emergency room.
A CT scan and a biopsy left doctors there wondering if it was a vascular lesion, a malignant or benign tumor, or this “strange disappearing bone disease.”
“He said it probably wasn’t that because it is very rare and it is a really nasty disease,” Nelson recalled of the possible causes of her shoulder problems.
Nelson had to stay at the Mayo Clinic for two weeks for more testing, including another biopsy that still didn’t result in a diagnosis. Surgery was the only answer.
“They cut me open, took a look around, took some more tissue and took bone fragments,” Nelson explained, adding that she had to wait a week for the results. “I was scared either way of what it could be. It could either be cancer or this creepy disease.”
A week later she got the diagnosis – it was the “creepy” one, Gorham’s disease, also referred to as vanishing bone disease. It is so rare that fewer than 200 cases have been documented in medical literature (see related sidebar) and only 11 at Mayo Clinic.
“I was actually relieved after waiting so long to figure out what was wrong with me,” Nelson said. “It was a relief to know that it wasn’t cancer.”
There is little known about Gorham’s disease, there is no cure, and no one is certain how to treat it, although there are methods that can slow down the mass of vessels from eating away at the bone. Nelson has undergone two procedures called embolization, which prevents blood flow to her shoulder bone so the mass can’t “feed” on it. She will require this procedure every three months.
So far, the treatment has shown some success and the mass has shrunk. Nelson may also start receiving monthly injections of a drug that is used for cancer patients who are getting chemotherapy. The drug aids in bone building.
Doctors think that the disease only attacks one area of the body, such as a shoulder or hip, and it does not spread to other bones. Chances are, the disease will be contained to Nelson’s shoulder.
She has had to give up her career as a hairdresser and now works part-time with school-aged children at the YMCA in Moorhead. Her left shoulder is in a sling to keep her shoulder in place, she can’t push or pull anything that weighs more than 2 pounds, or lift her arm over her head.
“The worst-case scenario is that they have to remove my scapula [shoulder blade],” Nelson said of the long-term affects of the disease. “They can attach the arm onto the ribcage so you can move from the elbow down, but you can’t move your shoulder.”
Nelson isn’t too worried, despite having an incurable disease that will require lifelong treatments. Instead, she is grateful.
“I’m happy it happened to me and not someone else,” she said. “It has helped with my faith and family relationships. Everything just gets stronger. I know how lucky I am.”
And she knows that no matter what happens, there are many people who have it much worse than she does – even if someday, she only has the use of one arm.
“I just know that I’ll be OK,” she concluded. “If I don’t have a shoulder, so what, I’ll be fine. I still have another one.”
ABOUT GORHAM’S DISEASE
Gorham’s disease is a rare musculoskeletal condition in which progressive resorption (destruction or disappearance) of the bone occurs. It is also known as vanishing bone disease.
The disease is characterized by a rapid growth of thin-walled vascular capillaries or lymphatic vessels that start within the bone. As the vessels increase, they invade the adjacent bone, leading to its resorption.
It may affect any part of the skeleton, but the most commonly involved sites are the skull, jaw, shoulder, rib cage and pelvis. Complications range from mild to severe.
The cause of Gorham’s disease is unknown and it is usually not recognized by doctors until a fracture occurs.
Gorham’s disease is extremely rare – fewer than 200 cases are reported in medical literature. Because it is so rare, it is commonly misdiagnosed.