A Perry Tale: Ryan's surgery

When Ryan was about four months old we noticed a bump on his right temple. We brought it up to his pediatrician at his six month visit. Dr. Patten suggested an x-ray so we could have a baseline for observing if it changed. We didn't notice any visual changes over the next months. At his two year check up we asked to have it x-rayed again. He was growing taller and more slim and it seemed like the bump was more prominent. That normal x-ray turned into Dr. Patten suggesting an MRI for more clarity.

The timing of the MRI was not communicated correctly and we received a phone call saying we didn't show up for it. In reality, we thought it was scheduled for several hours later. It ended up being rescheduled and it happened to be a day Dr. Patten was not in the office. Ryan had to be sedated for the MRI and he did well. Because our pediatrician was not in, we saw another doctor that day. We didn't have a great experience with her explanations and knowledge. Her initial diagnosis was Langerhans Cell Histiocytosis. We were referred to an oncologist at Blank Children's Hospital in Des Moines. This diagnosis left of shaken, rattled and scared to death on Friday afternoon.

We spent the weekend trying to absorb this information and gathering questions. We called Tord Alden, Michelle's brother in law and asked his experienced opinion. Tord is a pediatric neurosurgeon in Chicago and since we already had a friendly relationship with him, his knowledge and advice was helpful. I remember sitting in church on Sunday morning with tears streaming down my face, wracked with fear.

Monday morning, Dr Patten called right away to offer her assessment, her personal cell number and discuss many options. The oncologist we were scheduled to visit at Blank was a friend of hers from medical school and she was confident he would have more answers for us. Our visit to Dr. XXXXX was helpful. He showed us an MRI with Langerhans Cell Histiocytosis and Ryan's MRI and compared and contrasted the two. Overall, he felt we were dealing with an epidermoid cyst and NOT LCH, or any other tumorous concern. The plan of action was to find a neurosurgeon and decide what to do with this cyst.

Our first request was to have our insurance approve going out of network to drive to Chicago and have Tord do the surgery. Dr. Patten wrote a supporting letter to our healthcare insurance provider but our request was denied twice. We saw a neurosurgeon at Mercy in Des Moines but didn't get the right feeling about him. Ultimately, we wanted the cyst removed and the Mercy doctor thought it would be fine to leave it be. Our next referral was to Dr. Arnold Menezes at the University of Iowa Hospitals and Clinics. His 20+ years of experience gave us lots of confidence in his ability to take care of Ryan, remove the cyst and repair his skull. Dr. Menezes personality was brash and blunt. At one point during our visit he said, in his broken accent, "I don't care if you don't want me to do the surgery but any doctor saying leave it there is giving your terrible advice." We left Iowa City feeling completely comfortable with Dr. Menezes and Dr. Brian Dlouhy's plan. Surgery was scheduled for September 29, 2015.

This picture was taken in June 2015, celebrating Ryan's 2nd and Nick's 11th birthday. This picture made his cyst stand out visually.

Arranging for care for Lucas and Hannah while explaining (simply) that Ryan was having "surgery on his bump" had me feeling all the emotions. We arrived at the UIHC early the morning of surgery and shortly after check in we were greeted by Pastor Harrison and Pastor Bryce. What comfort they brought us!

I remember how packed that surgical waiting room was. So many people waiting on good news from the surgeon of the one they cared about. What a relief it was when our buzzer went off and we could meet with Dr. Menezes and Dr. Dlouhy for post op summary. Ryan was groggy and mostly just wanted me to hold him. For hours. And I did. Loving every bit of it and thanking the good Lord that he was okay.

To remove the cyst, they made a crescent shaped incision around it. They crushed the bone covering the cyst and basically scooped out the cyst. Then they used the crushed bone pieces and a medical comparison of putty to place back into the divet to make the skull symmetrical to the other side of his head. Eleven stitches sewed him up and he was all better! The pathology report showed no concern.