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Joshua: Spina Bifida Success Story

Joshua Toro, an 18-year-old high school student, enjoys spending time with his friends, but he would often say no to going out with them. That is until a recent surgery with Dr. Hittelman of Yale Urology gave him the freedom to say yes.

Joshua was born with spina bifida, which occurs when the bones of the spine do not form properly around the spinal column. Although there are varying degrees of spina bifida and the symptoms associated with it, severe forms of spina bifida can cause paralysis of the legs and issues of bladder and bowel control. Joshua, who has both paralysis as well as neurologic impairment of his bladder and bowel, wanted to enjoy his life to the fullest. “I’ve spent my whole life in a wheelchair,” Joshua said. “But what stopped me from spending more time with friends was the fear that I would lose control of my bowels while I was out having fun. I was too embarrassed to go hang with my friends fearing that it might happen, so I kept more to myself.”

A surgery known as Malone antegrade continence enema (MACE procedure) could help Joshua control when he would go to the bathroom, so that he wouldn’t have to worry anymore. “Dr. Hittelman told me many times about the surgery, but I was afraid of another surgery. I had to have so many surgeries when I was younger, that I just didn’t want to go through one more.”

Joshua first met Dr. Hittelman several years ago in the Yale Urology Spina Bifida clinic. “Joshua is a very nice, outgoing young man, who always maintained his outward appearances. However, he was very self-conscious about his bowel control, which prevented him from going out with friends or other social activities,” Dr. Hittelman remembers. At that time, Dr. Hittelman had discussed different management strategies for Joshua’s bladder and bowel.

In 2013, Joshua decided to have the MACE procedure performed. “Dr. Hittelman is a great doctor. He explained everything to me, and he was very straightforward. I understood all the pros and cons of the surgery and that there would be a long recovery.” Under the care of Dr. Hittelman, Joshua was able to put his fears of the surgery aside and focus on the outcome––which ultimately would give him the ability to live his life more fully.

“Now that Joshua has had the surgery, he has completely blossomed. He is an active, vibrant young man who subsequently joined a Spina Bifida travelling basketball team and is now planning on his college studies. I could not be more proud and impressed with Joshua. He has done great, and I am confident he will continue to do so,” Dr. Hittelman said.

“I’m glad I made the decision to have the surgery,” Joshua said. “I have really great friends and now I am more outgoing. I no longer worry about losing bowel control. Instead, I’m busy focusing on school and spending more time with friends.”

Rick: Bladder Cancer Success Story

In 2003, at just 55 years old, Rick was not thinking about retiring from his career at GE Electric Boat, where he’d worked for 31 years, but one day at work would change his life forever. It was a typical work day in November, until he used the restroom and saw significant amounts of blood in his urine.

“The day I saw the blood I knew something was really wrong. I was terrified,” Rick said. “The shipyard has a hospital so I went there immediately, but they couldn’t see any blood in my urine at that moment.”

Rick had been seeing a urologist yearly for his issues regarding frequent urination at night, so he followed up with his primary care doctor. Aware of his previous health condition, his doctor felt it could be a urinary tract infection and sent him home with antibiotics.

“The next time I saw blood in my urine it was the following month, during the holidays. I was off from work and had taken a bus trip to New York. When I saw the blood again, I knew the problem wasn’t resolved.” He called his urologist’s office this time and spoke with the doctor on call. She told him not to panic, blood in the urine could be caused by a number of reasons. “The truth is, I was scared to death.”

In January of 2004, Rick saw his urologist who sent him for an ultrasound and cystoscopy. The test confirmed that the bleeding was caused by a tumor on his bladder. “When I talked to my doctor at the time, he said that I could have a good 10 years to live. I had saved enough money from my 31 years of service at the shipyard, so I decided to retire to live the rest of my life to the fullest.” Initially Rick had the tumor removed and for nine years he continued to get treatments, called BCG, to manage the cancer. Even after several surgeries, there was continued growth in the bladder.

By 2012 the cancer had advanced into the muscle layer. His doctor at the time was concerned about the serious nature of the cancer now that it had spread into the muscle layer. He referred Rick to Yale Urology. During a consultation with Dr. Singh, Rick learned that he would need to have his bladder removed in the near future. In the meantime, he would continue his treatments with his current doctor.

In 2013, when Rick returned to Yale Urology to discuss the removal of his bladder, he met with Dr. Sprenkle, who would perform the surgery. “He was fantastic. He really listened to me and took the time to understand what I thought was important. He addressed all my concerns and made me feel comfortable with the treatment plan,” Rick said. “The surgery would require removing my bladder and my prostate. We talked about all my options and my lifestyle. I am really active, so Dr. Sprenkle felt a neobladder would be best for me. “It would allow me to urinate normally without any major changes in my external appearance.”

Rick had his surgery on May 24, 2013. “The two scariest times of my life were when I found out I had cancer, and when I was facing surgery to have my bladder removed. “I remember thinking, ‘I’ve had my bladder up until now, and now it needs to come out.’ But Dr. Sprenkle and everyone at Yale Urology were supportive and caring. I always tell people if you need surgery, then Yale should be your first choice. They really know what they are doing.”

If there’s one thing that Rick has learned, it’s that the dread about what might be wrong is a lot worse than getting the condition treated. He tells people if they have blood in their urine, or any concern for that matter, don’t wait or expect that it will go away on its own. Avoiding the issue is not a good plan and will not help you get better. “I know a lot of men are concerned about procedures that may lead to erectile dysfunction after surgery. And truthfully, ED was the biggest loss for me. You want to feel as whole as possible. But talking to Dr. Sprenkle about my concerns has helped. There are many options available to deal with Erectile Dysfunction post surgery. You should not let that stop you from facing your illness and heading down the path to recovery.”

After surgery and chemotherapy, Rick is currently cancer free. His neobladder works perfectly with his lifestyle. “It finally feels good not to have the cancer hanging over me. I feel great, and I’m out there enjoying life.”