Nadav is a 14 year old boy who was diagnosed with Neurofibromatosis Type 1 at the age of 2. He’s been having regular head and spine MRIs since the age of 4, and in 2013 started developing an intramedullary tumor in the cervical spine, at C3. In mid-2016 his medical team reached the conclusion that while the tumor was probably a low grade glioma, its continuing growth was liable to start causing neurological damage and recommended surgical intervention. The thought of “digging around” the cervical spinal cord, through which the controls for most of the body pass, for a child who is wholly non-symptomatic was deeply concerning, and wholly unintuitive. But after getting a couple of second opinions from appropriate experts, we concluded that we were left with no choice but to proceed.
We live in Israel where we have an excellent health care system. But given the rarity and risks of such surgery and the importance of being operated by a neurosurgeon with considerable experience of this kind of surgery, we reached out to Dr George Jallo at Johns Hopkins All Children’s Hospital in St Petersburg, Florida. Three weeks to the day after we first contacted Dr Jallo, Nadav underwent surgery at All Children’s. Just four hours after he was wheeled away, Nadav was back in recovery. The incision was beautifully stitched, glued and undressed. Nadav was squeezing fingers in recovery and out of bed within a few hours, though it took several days till he walked much further than a few steps. His pain rapidly decreased from a challenging 7 to a bearable 3. We saw him progress from day to day in leaps and bounds. Nadav suffered no neurological damage, and the tumor was completely removed. Just twelve days after the operation, Nadav flew back to Israel, and 17 days after the surgery had returned to school.
The combination of an excellent surgeon, starting without neurological damage (thanks to early diagnosis), a healthy attitude (Nadav was amazing!) and the benefit of youth gave us our son back “as good as new”, remarkably quickly and with relatively little suffering for him.