Lymphedema surgeon pioneers treatment and hope

Written by Kate Miller  |  Photographed by Alison Hillman

Amy Rivera has struggled with lymphedema her entire life. She was born with primary lymphedema, which was visible at birth, yet she was not diagnosed until she was 32 years old. Her disease, one caused by damage and blockages in the lymphatic system, affected her right leg, causing it to swell to nearly 200% larger than her left leg, which was unaffected. 

From childhood through her adult life, Rivera has faced challenges due to the disease. Being a kid who was different impacted her everyday life. “There were so many social and emotional challenges due to having lymphedema,” she says. “As a kid I was made fun of and stared at because I looked different. I was bullied in school.” And the unwanted attention didn’t stop there. She reflects, “When my husband and I were in the Dominican Republic on vacation, there was a group of teenagers who walked by. They just pointed at me and laughed.” 

This type of reaction caused her to spend much of her life hiding. Rivera says, “I just hid behind closed doors, making excuses to not go outside for any reason. Pants didn’t fit my leg, so I would wear long skirts and dresses to hide it. I didn’t want to deal with it.” She continues, “I faced this 24 hours a day, with nothing to provide relief for the pain. It’s emotionally exhausting.” 

When Rivera was finally diagnosed, the doctor told her there wasn’t much he could do. He recommended she use compression garments and go to physical therapy, but those things weren’t covered by Rivera’s insurance.

Due to the financial burden, Rivera had no choice but to be noncompliant with the treatment. “I couldn’t afford the therapies, and without those treatments the lymphedema got worse. These types of barriers to support make people with lymphedema give up.”

After dealing with so many roadblocks, Rivera started to lose hope. Then she met Dr. Granzow.

People dream of finding a surgeon like Jay Granzow, MD. He is a pioneer in a growing field, committed to advancing surgical innovations in lymphedema. What’s more important—he treats his patients like family. 

Dr. Granzow is an internationally respected lymphedema surgeon. His background includes residencies in Head and Neck Surgery and also Plastic Surgery. He specializes in microsurgery and super-microsurgery, which focuses on small and very small blood and lymphatic vessels, and he enjoys the challenge of making complicated procedures work. 

In a field with limited treatment options, Dr. Granzow is paving the way for better patient outcomes. He has created his own effective surgical treatment system for addressing each stage of lymphedema and is a sought-after thought leader, frequently speaking around the country and internationally.

This type of specialization and ingenuity are crucial when dealing with the complexities of lymphedema surgery. 

Lymphedema is a condition caused by damage or blockages in the lymphatic system, commonly as a result of cancer treatments. The damaged or blocked lymphatic channels cause inflammation which could result in life threatening infections which require hospitalization and intravenous IV antibiotic treatment. If left untreated, patients with lymphedema face increasing risk of lymphangiosarcoma, a deadly cancer. 

Someone who suffers from lymphedema experiences swelling, sometimes painful, in their arm or leg. It can also occur in both arms, or both legs. 

The main treatment goals for those with lymphedema are to stop or reduce swelling and to control the pain. Patients can do specific exercises to encourage drainage, wrap the swollen limb, wear compression garments and get massages with techniques focused on assisting drainage. 

Some cases of lymphedema require surgery to reduce swelling and remove inflammatory and excess tissue from the swollen area.

A renewed hope for healing

By the time Rivera saw Dr. Granzow for an evaluation, she had advanced stage 4 lymphedema. All of the doctors she’d previously seen told her the treatment she wanted for her leg wasn’t possible because of the severity of her disease.

After their consultation, Dr. Granzow, who has successfully treated hundreds of patients, told her he was very confident he could get the size of her right leg down to approximate the size of her left leg. Amy says, “I couldn’t bring myself to believe him because of the previous experiences I’d had with other doctors.” She was also worried about insurance barriers, logistics and time away from home since she lives out of state.

However Rivera couldn’t deny the results she had seen from surgeries Dr. Granzow had performed. With a renewed sense of hope from a leading expert in the field, she made the decision and traveled to Los Angeles for her surgery.

When talking about his patients, Dr. Granzow says, “I can’t treat people well by rushing them through the process, and I don’t want to rush them. This surgery is complicated, and it’s important to me to make sure patients understand what to expect every step of the way. I take care of them like I’d want my family to be taken care of, and patients do much better because of that.”

Dr. Granzow explains further, “There is support and therapy needed both before and after the surgery to ensure that it’s successful. That’s why it’s so important for me to spend time with my patients. I want them to really understand each phase and what to expect at every point in the process. I also like to connect my patients with people I have previously treated so they have the full assistance they need.”

Not only does Dr. Granzow ensure his patients feel prepared and with the clinical aspects of surgery, his office team helps patients obtain insurance coverage, which can be very difficult for this type of treatment. He says, “My team has tremendous success in getting insurance coverage for our lymphedema surgeries. We have had excellent results in hundreds of successful cases and the data to show the insurance companies that these surgeries really works. It can be hard for patients to face insurance challenges and my team is here to help with that.”

Each patient is a unique case, requiring personalized treatment to get the best results for that individual. Dr. Granzow says, “Overall we have a robust system in place that works. We can treat most patients with lymphedema and get consistent, good outcomes.”

The results speak for themselves, like in Rivera’s case. As of December 2018, only a few months after surgery, her right leg went from being stage 4 and nearly 200% larger than her left leg to now being only 3% larger. 

In describing her experience, Rivera says, “Dr. Granzow is nothing like the other doctors I’ve met. He puts the patient first every step of the way. I just wish there were more doctors like him.” She continues, “He really cares about this disease and wants to help his patients. What he did changed my life. It feels like a miracle. Little things most people take for granted are life-changing moments Dr. Granzow gave back to me.”