By 2011, India had been spiraling downhill at a very rapid pace. My little girl went from standing and walking assisted, dancing, sitting on her own and almost completely pain free to not being able to walk, stand, sit, dance and in constant pain to the point of not being able to attend school for a full day. Here is a video that shows India's gains and losses.
This has been a terrible experience for all of us, the helpless feeling as my daughter cries in pain is chilling. Either Vikki or I were up in the middle of the night, every night trying to comfort India.
Until 2011, we had been putting our faith in a pediatric orthopedist from our home state. This physician's bedside manner was rough but I believed this doctor was focusing on India’s needs, the "whole picture"; not just slice and dice. This doctor said our only real option to reduce India’s hip pain was a very intense surgery called the McHale procedure. To describe this procedure in the simplest way, they cut off the top of the femurs, leaving a void in the upper thigh that they fill with fat from other areas of the body. This didn’t set well with us, something was very wrong. In addition, this doctor put my little girl on a monthly Pamidronate infusion. This wasn’t a pleasant experience and India was clearly not happy about it. The infusions made her sick and we saw no positive results. We were confused and scared.
As luck would have it, my wife came across a world renowned physician in New Jersey while reading published material related to cerebral palsy. This doctors writings were absolutely amazing. I felt a new sense of hope with each word I read. We immediately made the decision to book a flight to New Jersey and meet this man.
Our meeting was fantastic and to say I'm elated would be an understatement. This doctor, Dr. Roy M. Nuzzo, was hands down the most knowledgeable, no bullshit physician I've ever met. He took his time, hyper focused on us and was very concerned about the "overall picture" of India's life; she wasn't just another patient.
Dr. Nuzzo told us that the procedure that our doctor wanted us to do, McHale procedure, was not only inappropriate, but it would cause my daughter a lifetime of pain and infections. When I asked about other "replacement" surgeries, he didn't pause for one second with his response; NO. Unlike other doctors who were willing to put my daughter through a year of traction/recovery, certain pain and no guaranteed outcome, he went the opposite direction. Dr. Nuzzo gave us an outpatient option that would take away India’s pain and allow her to get on with life and being a kid.
The first procedure he recommended was called an "Alcohol Block". This is where the nerves causing the pain are treated with an alcohol solution that deadens them. This lasts anywhere from 1 to 10 years or more. Then he recommended a series of "Soft Tissue Lengthening" (My daughter had this once before). I asked if India could do the things she loves after the surgery like standing and dancing. Dr. Nuzzo told me that his instructions post surgery will be "let India get on with her life". Those were the sweetest words I'd heard in a long time.
Dr. Nuzzo also spent a long time explaining to me why the infusions my daughter was getting are not only useless but harmful. He said that India’s previous physician should never have started these treatments, there was no reason and some of the outcomes that were promised were 100% false. There I sat feeling
I booked my child’s surgery on the spot.
I was incredibly thankful that we came across Dr. Nuzzo and especially after all we’d been through with India, I was once again reminded that doctors are "educated guessers" and I should never hesitate to do my research and get a 2nd opinion.
Dr. Nuzzo can be found via his website: http://www.pediatric-orthopedics.com