We left the house at 4am for Rayden's appointments today. I cannot believe how much Rayden has grown up. The technician wanted to start the IV contrast but after I told him Rayden was a very difficult stick, he decided to take him upstairs to the PACU. Once word got out that Rayden was there, a ton of nurses, orderlies, and doctors came to see him. (He made a lot of friends when he was going up there three times a week for 65 days!) Even though Rayden cried a little, he remained perfectly still for the nurse to get the IV in. No one had to hold him down or anything. He sure has come a long way! This MRI was expected to take an hour and a half. I never thought Rayden would lie still that long. I don't think I could lie perfectly still that long! The technician placed headphones and some big goggles on Rayden. He was able to watch The Lion King during the exam. I sat in a rocking chair at the foot of the machine just in case he needed me. Unbelievably, our little MAN, never moved a muscle. Honestly, I think he fell asleep.
The MRI showed acute spondylolysis with associated bony edema, facet hypertrophy and a small synovial cyst all at the left L4 level.
1- Spondylolysis and bony edema are fancy ways to say he has Spina Bifida.
2-Facet hypertrophy is a non-curable problem that causes the facet joints in your spine to enlarge. New bone growth and bone spurs can also develop as the joint tries to repair the damaged cartilage. The swelling and new growth can narrow the spinal canal compressing nearby nerves, causing pain.
3-A synovial cyst is a fluid-filled sac that develops along the spine. It may cause pain, tingling, or cramping in the lower back and legs.
Dr. Elton, Pediatric Neurosurgeon, has always told us that the spinal cord of a person with Spina Bifida will always look tethered on an MRI. Therefore, he operated according to the symptoms and complaints, not the images. With all the pain Rayden has been going through lately and the progressive need to use his wheelchair, he recommends another tethered cord release surgery. This is the same one that resulted in a 65 day stay in 2021. Dr. Elton said due to all the complications he had last time, he would have other surgeons on stand by and go ahead and get plastic surgery on board as well. I asked about a recommended time line and he said we could wait until after our trip to Disney but he wouldn't recommend waiting much longer than that. He suggested doing it over spring break in April. Rayden remembers all too well the pain of this surgery and became overly silent and teary eyed in the office. I tried to show him my "brave face," but needless to say, my anxiety level escalated through the roof and I just needed to get out of there! I told Dr. Elton we would just call him back with a decision.
When Michael and I had time to digest this, we decided to postpone the surgery until we are both out of school in early June. This would give us time to look up alternatives and get a second opinion from Shriner's Hospital in SC as well. I emailed Dr. Elton and asked if there was any other way to correct a tethered cord besides cutting open his back again. Could it be done laparoscopically or are there any new techniques or approaches? We just cannot allow Rayden to go through that horrific experience again. Dr. Elton responded, saying he understood our trepidation. He said the only other way currently, which he does not do, is spinal shortening. This is removing an entire vertebra and then doing a large spinal fusion with rods and screws. The idea is that you are making the spine shorter and not doing anything with the tether. It is a newer procedure so it is unclear if it is better. It is also a major surgery with significant risk of blood loss and spine fusion failure. He also said as much as he would like to promise Rayden wouldn't go through something similar to last time, there isn't a way to promise that. It isn't likely, and just because it happened before doesn't mean it will happen again, but it is still a risk. Not very reassuring...
