Susan E. Weimer

On July 1, 2015,  Dr. S. Robert Rozbruch performed a closing wedge osteotomy with plate on my right femur to correct a malunion of 53 years.

I was born with a metabolic bone disease that was inaccurately diagnosed in the 1950s. Surgery and braces in the 50s and 60s ultimately left iatrogenic dysplasia in both legs, in addition to some congenital bowing. The last surgery in 1962 left me with the malunion.

Over the decades I consulted a dozen orthopedic surgeons to see what might be done about my leg. Those who were honest enough to know their limits, said they would not touch that leg. Nothing could be done, they said. It was too deformed. Those who apparently did not understand the complexity of the malunion and bone disease quickly said that a knee replacement would be possible.

Fortunately, a cousin, now retired for many years, is an orthopedic surgeon. Thirty years ago, he cautioned me to wait until I was in my 60s for a knee replacement. When I hit that magic decade, he cautioned me that he didn’t think I would be able to sustain knee replacements, since my bones and joints were not properly aligned.

With my cousin’s caution in mind, I sought out one more orthopedic surgeon, who quickly said “a knee replacement – no problem.” I asked “What if it doesn’t work?” “Well, then we amputate. Some patients prefer to go that route anyway. I had a patient who just had that done…” To myself I said, “No we don’t go that route. You’re fired.”

I had lived and worked in NYC and Connecticut for over 35 years, but at this time, lived in Tucson, AZ. I researched online and found Hospital for Special Surgery, when I had been looking for the Hospital for Bone and Joint Disease. I was still working, but made a mental note to return to the HSS website when I was able to make sufficient time and had funds for a consultation.

Six years and 3 falls later [one of them resulting in 3 fractures to my zycomaticomaxillary complex], my mobility had gone from gradual decompensation to gross pain and the right knee completely freezing up. I had been walking with a cane for 20 years or so. I was stumbling, hobbling, walking less, and felt cornered. By the fall of 2014, I could not walk outside more than 5 minutes at a time, once a week. The chief reason to live in Arizona is the bright day, blue sky, and miles of mountain, canyon, riparian and desert trails.

When I went back online, there on the side of HSS’ homepage, was a link to the Limb Lengthening and Complex Reconstruction site. I watched Dr. Rozbruch’s 2 minute video about 20 times. He said many things that immediately resonated, especially about Complex Reconstruction. As a self-referred patient, it took persistence, many calls and an e-letter to get through to his office, but I finally did, and was offered an appointment sooner than expected.

When we eventually met, I felt I was in competent hands. Dr. Rozbruch admitted that my situation was “complex, complicated” and a “science project.” I found his use of these phrases very reassuring. He at least understood what I knew to be true. He offered no quick or magic fixes. Dr. Rozbruch could think outside the box, a very important asset. He laid out a proposal involving 3 possible surgeries. No one had ever acknowledged the complexity of my condition; no one had ever bothered to explain or educate me about the malunion and the consequences it posed. Dr. Rozbruch did both. From the get-go he was, and continues to be, a wonderful teacher. I asked a lot of questions during the appointment and via e-mail during the months leading up to the surgery.

Dr. Rozbruch was very confident that the first surgery would probably be the only one needed to correct the malunion and get me back to functioning at a higher mobility level with less pain. He was also honest enough to reply “I don’t know” to some of my initial questions. That also ranked very high with me in the honesty, hence trust, department. There are no promises in life.

Surgery was scheduled for July 1, 2015. As the date approached and more questions arose, I almost backed out. Answers to questions about how well my bones would heal remained unclear. However, Dr. Rozbruch said one thing that made all the difference: “I’ve never had a patient like you who asks a lot of questions. That’s good. Never be afraid to ask questions.”

While I did not have the surgery done for cosmetic reasons, nevertheless, I was stunned by the visual result of the surgery. In my eyes, the leg was beautiful: a leg I was intended to have. I had been camera shy most of my adolescent and adult life. Now I couldn’t wait to show people the results. It was amazing the boost of confidence that arose from just the appearance of the leg, not to mention gradual improved functioning.

The physical therapist, Jason White, DPT, at Performance Physical Therapy in Connecticut, also helped so much in getting me on the right road with manual therapy, the AlterG anti-gravity treadmill, and exercises, which I continue to do each morning. My sister and brother-in-law in Shelton, CT were so generous in opening up their home to me for 4.5 months. I could not have done this without their daily support.

Dr. Alana Serota, Metabolic Bone Disease specialist at HSS, and Dr. Karen Louise Herbst, endocrinologist at University of Arizona Medical Center in Tucson, were very helpful in providing consultations and assurance that my phosphorus level would be sufficient for healing.

Prior to the surgery, I had finally been able to have genetic testing done, which revealed I had a mutation that was not yet registered – a never before seen mutation - on the Human Genome project.

Due to the metabolic bone disease, the recuperation time, and ability to grow new bone was far longer than it would take others. That was more apparent to me than I think it was to everyone else. At the 6 month appointment, new bone was solidly in place, which had not been the case before.

While the plate was painful at first, it is only somewhat bothersome at this point. I view it as a great security for far improved mobility. I am aware enough to know how far to push my newfound mobility; and I continue to check in with Dr. Rozbruch if I’m not sure.

There are some more appointments with Dr. Rozbruch. He is someone with whom I hope to keep in contact. His surgical skill, patient education and ability to communicate with patients, makes him among the finest doctors I have ever had.

I am at the 10 month post-surgery spot, and at 8.5 months returned to work for the first time in 2 years. Although a retiree, I opted to return to work as a “payback” for my good fortune. Taking initiative and persevering in this research and surgery appear to have reaped rewards for me. To want to share the results with others in my own professional capacity seemed only natural.

For the first time in over 20 years, I have begun to walk, and walk well, without my cane, and can enjoy over two hours of walking/hiking and swimming a week. Walking the 22 miles of the Grand Canyon’s Rim Trail is my first assigned goal. I only have 19 more miles to go on that jaunt.

There is so much else.

It is truly wonderful to be back in the game. Thank you team.

Thank you Dr. Rozbruch