My wife, Pam, was diagnosed with retroperineal fibrosis, or RPF, in August of 2006. She suddenly became very weak, and was sleeping in excess of 20 hours a day. We got her to a urologist and it turned out the fibrosis had wrapped around both of her ureters, constricting them to the point where she was going into renal failure. The urologist put stents in her the very next morning. Later, the nephrologist who treated her said that her kidneys had become plugged up and that if she hadn’t gotten the stents when she did, she would have died within 24 hours.
We were also told that since RFP is a rare disease, we needed to get to a teaching hospital in Boston or New York for treatment. We decided to go to NYU Langone Medical Center, where they use a team approach to treating RPF. The rheumatologist we consulted with, Dr. Bruce Solatar, looked at Pam’s CT scan and said “You’ve got to see Mike,” referring to Dr. Michael Stifelman, their team’s urologic surgeon. We met with Dr. Stifelman a short time later, and he spent close to an hour talking to us. He went over the CT scans with us, showing how the fibrosis involved the full length of both ureters, and said there was no doubt in his mind that Pam needed surgery to remove it. We decided during that meeting to go ahead with the operation, and Pam was scheduled for surgery in a month’s time, which was the next opening on Dr Stifelman’s schedule for a full day in the OR.
Dr. Stifelman also said that his preference was to do the surgery robotically because it allowed for a faster recovery than open surgery, which used a long zipper incision, and because he could also do more with the robot. While he was 99 percent sure the robotic approach would work, however, he also warned us that you can never really know how bad the fibrosis is until you actually operate, and that he was prepared to switch to an open procedure if necessary. We agreed with this approach.
Pam went into surgery on a Friday morning. Since she had to have both ureters operated on, the surgical team had to change sides with the robot in mid-operation, which took a little more time than an open procedure would have—about 9 hours in all. Still, instead of a two-foot scar, Pam only had eight small, half-inch incisions in her belly. Dr. Stifelman came out halfway through the operation to say that he’d found exactly what he’d expected to find, and had fixed it exactly the way he’d thought he was going to fix it. That’s all I needed to hear.
Pam went home at noon that Monday, two and a half days after the start of surgery—remarkable, considering she’d just undergone a 9-hour operation. If she’d had the zipper surgery, she would have been in the hospital for a week. The rest of her recovery was just as remarkable. Since the incisions were so small, they healed very quickly. The hardest part for Pam following the operation was weaning herself off the prednisone she was taking to prevent the fibrosis from coming back.
Today, Pam continues to do well. Her latest MRI, done in April, 2010, found just 2 mm of fibrosis present, compared to 22 mm before surgery. The treatment at NYU has been fantastic as far as we’re concerned, and there’s no doubt in our minds that we made the right decision in our choice of surgeon and method.
We’re part of an RPF support group now (http://health.groups.yahoo.com/group/retroperitoneal_fibrosisworldsupport), and have been since shortly after Pam’s diagnosis in 2006. The support group’s website refers to Mike Stifelman as the world’s leading expert on treating RPF from a surgical perspective. But the thing that impresses us most about Dr. Stifelman is that when he’s in a room with a patient, there’s nothing else on his mind but that patient—he is 100 percent your doctor, making sure that whatever you need gets done. The rest of his staff is the same way. I would recommend Tisch Hospital and Mike to everyone.