Fighting Back with Knowledge

November 14, 2010/ 4:30 PM

POSTED BY BRITTANY CURRAN

A SENIOR AT STEPHENS COLLEGE

Finding information on MALS, reminded me of finding research for a research paper. It took me hours to find one article on this syndrome. MALS is so rare, that there are not very many studies or cases that have been documented. Trying to research this condition was extremely frustrating. A friend of my mom’s read an article in the Springfield newspaper, Chronic Pain: MALS may provide an answer, which talked about a teenage girl with chronic stomach pain. She had been dealing with this pain for two years, she had gone to Mayo Clinic and when they could not find anything wrong with her, they told her and her parents that it was all in her head. This girl had missed 180 days of her sophomore year, and her entire junior year of high school. My symptoms all seemed to match the symptoms this girl had been having before she had the surgery. We then sent the article on to my primary doctor in Jefferson City, MO. My primary doctor is, Dr. Stanley Horner, so that he could look into this condition and start trying to get a hold of the doctor who is mentioned in the newspaper article. Dr. Horner said, “Sometimes doctors have to be open to learning from their patients, and not just rely on what they learned in medical school. Sometimes, the answers don’t come from the knowledge they learned from books, but they have to be open to ideas and suggestions that their patients bring to them.” This is the moment I felt someone actually believed that I was in pain.

Dr. Liu, is the pediatric surgeon from Chicago, who operated on the girl from the newspaper. Dr. Liu is the leading doctor in the nation who performs MALS surgeries. After speaking to his nurse, we were told to go get a 3D Image CT Scan, to confirm our suspicions. When I had been told to get yet another test done I became a little upset. Throughout the course of these past three years, I have had a multitude of tests done on me. I started with an Upper and Lower GI, ultrasounds, MRI, CT Scan (with and without dye), Doplar ultrasound, and the final definitive test was the 3D Image CT Scan. The radiologist who read the last CT Scan immediately called Dr. Horner because the image showed “something was not right.” We now knew what was wrong, but the next hurdle was getting an appointment with Dr. Liu who had been fielding phone calls from all over the country since that newspaper article had come out.

The symptoms that can come with MALS are severe stomach pain, especially after eating meals, and weight loss. There are some other symptoms that can come with this syndrome which include, nausea and diarrhea. I only suffered from the weight loss, and severe stomach pain, but my pain had been going on for so long that I am in a constant state of pain. Until a month ago, those were my only symptoms, but I recently began having the constant feeling of nausea all day long. Because I have been eating very little, to avoid the pain and nausea worsening, I have become dehydrated at times. I have also started having fainting episodes because my body has been trying to compensate with the pain that it is experiencing.

Luck was on my side when I got an appointment with Dr. Robert Thompson. Dr. Thompson is a vascular surgeon at Barnes Jewish Hospital in St. Louis, MO. He is the next stop on this blogger’s journey to becoming healthy once again.