Dear Family and Friends,
Next Tuesday (my 65th birthday) Barry will have surgery to hopefully stop the degeneration of his spine. A few weeks ago he started experiencing electrical shocks down his arms and back when he leaned his head forward. He was referred to a neuro-oncologist who told him that this is Lhermitte’s (new vocabulary word) and we needed to find out what was causing it. We were sent for an emergency MRI because everyone thought it was his leukemia (T-PLL) rearing its ugly head in his spine. Fortunately no cancer was found but Barry was referred to a neuro-surgeon who did further imaging and diagnosed cervical spinal stenosis, most likely caused by the total body irradiation Barry received to prepare him for his second transplant.
The surgery he will have is posterior surgical decompression and stabilization. The surgeon will take out parts of four vertebrae (C3-C7), put in some bone graft and also titanium rods and screws. The surgery itself is 3 hours but the recovery will be long and they warned, painful. He will be in the hospital for 2-4 days. He will have to wear a hard cervical collar for 8 weeks. After 2 weeks he will get a soft collar for eating and sleeping. Recovery takes anywhere from 3 months to a year. The spinal fusion takes about a year to a year and a half.
There is no other treatment for this condition and it will not improve on its own. Barry’s gait is already affected and he cannot pass a sobriety test (heel to toe walking). He has some other neurological deficits as well. The surgeon, Dr. John Ratliff, was concerned that the symptoms came on so quickly.
There are risks to every surgery, and of course, spinal surgery has its own very scary risks. However, Barry is healthy (for him) right now, having survived pneumonia in December, and a serious upper respiratory infection in January. The anesthesiologist who we met with yesterday told us that this is a routine surgery and people with Barry’s complicated medical history are the norm at Stanford.
Barry’s hematology team has been involved step by step and are totally on board for this surgery.
It wasn’t an easy decision to make, but we feel confident that it was the right decision. No guarantees, but the alternative is not pretty.
Please send positive thoughts, prayers and healing energy our way on Tuesday morning.
On a brighter note, we are working with a very experienced literary agent to sell our book about our journey through transplantland.