Conner took this picture of Madi and I. He's quite the little photographer!
I think I posted before that Madi's renal reflux went from a level 2 to a level 5. That is pretty much the reason that we are cathing her now. One reason for the change could be tethered cord, which is essentially where the nerves grow in to the scar tissue, causing problems as the child grows. Here's a great explanation:
At birth, the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In a baby with spina bifida, the spinal cord is still attached to the surrounding skin, preventing it from ascending normally, so the spinal cord is low-lying or tethered. Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord. This can result in back pain, leg pain, changes in leg strength, progressive or repeated muscle contractions, orthopedic deformities of the legs and scoliosis, and bowel and bladder problems. A definitive diagnosis of a tethered spinal cord is made through diagnostic tests.
The shunt is checked through a computed tomography (CT or CAT scan) or magnetic resonance imaging (MRI). In some cases, the shunt is tapped to assess shunt function. If there is any question about shunt function, the neurosurgeon may explore or revise the shunt, before considering operating on the spinal cord.
If the shunt is working well, usually an MRI of the spine is done to exclude other problems. Additional studies such as a Manual Muscle Test (MMT) and special bladder studies (urodynamics) may be prescribed. These will be compared with prior studies to assess changes and to give a baseline against which to compare after the surgery. Untethering is generally performed only if there are clinical signs or symptoms of deterioration.
The surgery involves opening the scar from the prior closure down to the covering (dura) over the myelomeningocele. Sometimes a small portion of the bony vertebrae (the laminae) are removed to obtain better exposure or to decompress the spinal cord. The dura is then opened, and the spinal cord and myelomeningocele are gently dissected away from the scarred attachments to the surrounding dura. Once the myelomeningocele is freed from all its scarred attachments, the dura and the wound are closed.
The child usually can resume normal activities within a few weeks. Recovery of lost muscle and bladder function depends upon the degree and length of preoperative implications. The combined complication rate of this surgery is usually only 1 to 2 percent. Complications include infection, bleeding, damage to the spinal cord or myelomeningocele, which may result in decreased muscle strength or bladder or bowel function. Many children require only one untethering procedure. However, since symptoms of tethering can occur during periods of growth, 10 to 20 percent require repeated surgery.
Although having a tethered cord (Basically, all children who have Madi's form of SB do have tethered cord, it's just not always problematic) would give us answers to why her bladder problems are worsening, it's not a good answer, because it means a yucky surgery and hospital time. Though I would love to know why her bladder condition is getting worse, I'd also hate to see her undergo yet ANOTHER surgery and more anesthesia, so I'd really hate for it to be tethered cord. We go in for a full spinal MRI on Wednesday at 10:30. Madi will go NPO earlier that morning and will have to be sedated (put under anesthesia) for the MRI because it is a long 45 minute one. They will let me be in the room while she is put under, then again when she is woken up, but I will not be able to be in the MRI room (though I plan to try and push for it again) during the procedure. I hate that they have to put her under for it. When they are doing a 'big bang' MRI to check her shunt, they allow me to go in the MRI machine with her. Because this one is so much longer, though, and they have to do anesthesia, that will not be a possibility. I am really sad about that, but it is what it is. We then have an appointment with Dr. Moss, her neurosurgeon, on the following Tuesday to discuss the results. I need to call and see if we will be going straight to surgery that day if it is tethered, and if I need to pack and prepare for that, or if we schedule surgery, go home, and come back. Please keep our little Madi in your prayers this week. We will keep everyone updated.