Rachel had an appointment with her surgeon in Boston on Friday morning and she needs surgery as soon as possible. The supporting screws are loosening and the ones at the top of her resection area have pulled completely out of the bone and her spine is out of alignment (sublaxation) and there is narrowing of the space between the vertebrae (stenosis.) This puts her spinal cord at risk of injury.

This is not her actual scan but it is pretty similar to what we saw on hers, though hers is a few vertebra below the one in the scan. Notice the C4 vertebra is not aligned with C5 in the photo on the left:

This certainly explains why her pain keeps getting worse; this has probably been gradually happening since late November when her recovery from surgery started feeling worse instead of better.

The doctor sent her for a standing X-Ray and put in orders for a spine CT that she can have done here in Maine and sent her home with a cervical-thoracic brace to try to protect her spinal cord from injury. The brace looks like this one (not Rachel in the photos):

As you might imagine, this is very uncomfortable to wear and makes eating and drinking very difficult.

Since her spine is out of alignment, her surgery will be complex, since it involves moving it back into alignment, which also means moving the spinal cord back into alignment. They will be replacing the carbon fiber rods and screws (we weren’t even aware there were any rods – they only told us there were 4 screws) with titanium and ones that are supposed to fit into the bone better. Unfortunately, this also means future imaging scans will be harder to read, which is why they went with the carbon fiber hardware to begin with. Her recovery time will be about the same as her surgery back in September, or maybe a little longer. The surgeon said they would be putting her head/neck in traction during surgery to try to gently pull it back into alignment and that they might want to admit her to the hospital a few days before surgery and put her in traction beforehand, while she’s awake and able to inform them if she’s having problems with numbness or other symptoms. If her spine can be better aligned before surgery, it will make the surgery safer and less complex and probably make the recovery easier. However, it’ll be a really uncomfortable few days for Rachel, as it would involve being immobilized with 4 pins that will be directly inserted into the bones of her head (2 near her temples and 2 in the back) and attached to wires and a device that will slowly and gently try to pull her neck back into alignment.

They currently have her surgery scheduled for June 7 and we are waiting for the surgeon to confer with his colleagues as to whether or not to use the traction before surgery. If they do, she’ll probably be admitted to the hospital to start that around June 3 or 4.

Caitlyn’s high school graduation is June 10, so Rachel will miss that. I’ll leave Rachel and head home to see Caitlyn graduate and then rush back to Boston.

Rachel’s Make A Wish trip to Scotland was supposed to be June 25, so we have to reschedule that. The surgeon recommended no earlier than early August and suggested waiting until next year would be better (since she’s goes off to college at the end of August.)

As you can imagine, this is pretty discouraging for all of us and just serves to emphasize that a battle against cancer never ends.