Rare Urinary Condition Solved. Experts Were Stumped; Dr. Santucci Had the Answer

Jesse F
“Meeting Dr. Santucci was life-changing,” Jesse Forrester, 21, says. How can someone so young say that? Jesse is a fitness fanatic. He played soccer every year till he went to the University of Michigan to study accounting. He still works out every day, running, lifting weights, and more.

However, over a year ago he ran into a problem that no doctor seemed able to address.
He started urinating a lot, then noticed he lost control over when and how much. As time went on, it didn’t go away, only grew worse. He saw a urologist at a respected suburban medical center who ran “every kind of test” on him. “There were cameras everywhere,” Jesse recalls. They tried different prescriptions, but nothing seemed to slow it down. The condition continued to worsen. The urologist sent him to another specialist, who looked at all the tests and ordered a full MRI. “You have a cyst,” the specialist finally told him. “It’s next to the sphincter muscle.” Far from giving Jesse hope, what he heard next stunned him. “It’s in an area that I can’t get to without cutting through muscle, organ tissue and more. And it’s so close to the sphincter muscle there’s a risk of damage that could leave you without bladder control for life. And at best, there would be a 50% improvement.” Seeing Jesse’s disappointment, he recommended that he “take a break” from all treatments for two months, then come back to see if it improved on its own.

Jesse wasn’t willing to wait two months. He went online and found a well-credentialed specialist at another major medical center in southeastern Michigan. They met over Jesse’s many tests and MRI results. “I don’t know what you have,” the specialist said. “You’re a robotics expert,” Jesse countered. “Can’t you do something about the cyst with robotics that would be better than regular surgery?”

The renowned specialist explained that robotics couldn’t reach this area of his body. He’d have to do it as an open surgery. Jesse would spend six to eight months in bed to recover, and the risks were high. Jesse asked him what he would do if the doctor were in his position. “I wouldn’t do the surgery,” he said. “You should try to manage this with antibiotics for the rest of your life.”

The devastation was complete. “I felt more alone than I’d ever felt in my life,” Jesse said. “For the first time, it hit me that there was no hope.”
Then, the specialist had an idea. “There’s a guy I know at the DMC,” he suggested. “I’ll call him and give him your information.”

Jesse was in the throes of despair when he left the specialist’s office. He went back to work, trying to get a grip on what he’d been told. His cell phone rang. “It was Dr. Santucci from the DMC,” Jesse said, taken by surprise. “You never hear about surgeons directly calling the patient before meeting them. It’s always, ‘make an appointment, meet his colleagues, then finally shake the man’s hand that could help you.’ He wasn’t like that,” Jesse added for emphasis. “He said he was interested in my case.”

Although it was a holiday week, they met during Christmas break. Dr. Santucci performed an outpatient cystostomy—a procedure using a device that goes inside the tubes to the bladder with a camera. Jesse’s grandparents flew in from Florida to be with him.

“I’ve never seen what you have before,” Dr. Santucci told Jesse. “It could be a birth defect just coming out now, but I don’t believe it’s what the others said it was.”

When Jesse woke up from the procedure, he realized he had a urinary catheter in place, so he knew something had happened. He looked up to see Dr. Santucci and another doctor standing over him. “I think I found out what it is and I think we fixed it,” he told Jesse.

“I could barely accept what he was telling me,” Jesse recalls. “It was too much to hope for, that this miracle was possible.” As he listened, incredulous, Dr. Santucci told Jesse that what appeared as a cyst on the MRI and CT scans was not a cyst at all but a hole in his ureter, the tube that carries urine from the bladder. Below that hole was a “pond” where urine was collecting. Then, when it was full, it forced its way out all at once.

Dr. Santucci mended “the roofing of the urethra,” as he put it, which caused excessive bleeding. “I’d never seen this condition before,” noted Dr. Santucci, “So we proceeded cautiously. We told Jesse to drink lots of fluids, avoid exercise and workouts of any kind for a week, then come in so we could check him out.”

Jesse’s grandparents were with him to take care of him while he recovered. When he went back to see Dr. Santucci, he was sore, walking was hard, he’d been drinking lots of water and staying close to bathrooms. The recovery was complicated by passing blood clots that caused great pressure, then great release, with equal parts blood and urine. Eventually, though, the healing continued, and soon after, he was working out again. His grandparents returned to Florida.

Jesse had barely told anyone about the problem he’d been suffering with for the previous 14 months. Suddenly, he couldn’t stop telling people what a great thing had happened to him once he met Dr. Santucci.

Congratulations Jesse! Great job Dr.Santucci!

You can learn more about Dr. Santucci here.

2 thoughts on “Rare Urinary Condition Solved. Experts Were Stumped; Dr. Santucci Had the Answer

  1. Dr. Santucci is the best! I’ve never had an operation with him but have had the chance to hear his knowledge via an interview and was floored! He is a leader in his field which is why it didn’t surprise me when he had an answer to this situation.

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