Kaleb underwent two optic canal decompression surgeries. His first was on Monday, February 1, 1999 on his right eye (his "bad" eye) and the second was on Wednesday, February 24, 1999 on his left eye (his "good" eye). Both of the surgeries have been performed at Children's Hospital in Columbus, Ohio by Dr. Edward Kosnik, a pediatric neurosurgeon.
The details of the surgery includes cutting his scalp from ear to ear, removing a portion of his skull, taking a high-speed drill and removing the calcium deposits on the optic canal to release the pressure on the optic nerve. Each of the surgeries was approximately 7 hours in length.
One characteristic of osteopetrosis is extremely dense bones. Due to the density and hardness, it takes a long time to drill through the bone and it is not uncommon to encounter broken drill bits during the surgery. With each surgery Kaleb has had approximately 55 stitches, beginning at the top of the ear and extending over past the opposite eye. The incision is above his hairline so his hair covers it and the scar is hard to notice.
At his last visit, Kaleb's vision was 20/160 in his 'bad' eye. Before we performed the surgery, the doctors believed it was 20/600. We believe that the improvement is because Kaleb is more reliable now (he was only 3 years old when he had the surgeries) and we believe the optic canal decompressions were successful. We closely monitor his optic canals with catscans, mris and skull base xrays.
Please feel free to write me at kalebsmom@core.com to share your personal experiences or ask questions regarding osteopetrosis.