The Good, The Bad and The Ugly

Let me start by saying that Dr. Jane, Jr. is wonderful. He has a wonderful bedside manner that puts a parent's mind immediately at ease. Here is the good news--he doesn't want to cut Abby open just yet. Dr. Jane showed us Abby's MRI's. What they show would be much easier to show you in a picture, but since I don't have that capability, I'll do my best to describe it.

There are two parts to your spine, the bony spine and the spinal cord which is essentially a column with fluid and nerves inside the bony spine. Most people's spinal cord stops at about midway down their back. Abby's goes all the way to the end of her lumbar area (which pokes out instead of in--hence the bony area that we can feel through the sacral dimple). The nerves of Abby's spinal cord are tethered by a fatty substance at the end of her cord. She also has fluid in her cord that is not supposed to be there. It is not a great deal of fluid and we are going to monitor it closely. She also does have the spina bifida occulta that was mentioned by the pediatrician.

To Dr. Jane, the important thing is that Abby is not presenting "definite" symptoms. We "think" she may have pain and we "think" she may have tingling, but there is nothing to prove this. Dr. Jane does not want to take the approach of trying to detether the cord without further proof for a few reasons. First being that nothing has shown that all tethers cause problems. To put it plainly, he doesn't want to try to fix something that has no reason to be fixed right now. This decision will ultimately be based on more tests.

This is the bad. Abby will need another MRI. This one will be twice as long as the first one because it will focus on the thoracic and the cervical portions of her spine. This will be able to be done locally where the first MRI was done, but will probably have about a month wait or so again. Dr. Jane said that they do 24 hour 7 days a week sedated MRI's at UVA and it would probably still take that long to get it. Along with the MRI she will also need a urodynamics test to check the functioning of her bladder. This will ensure that there is no loss of sensation in the bladder. If there is, we will detether.

The ugly. Abby will also have to undergo an EMG (Electromyography) test. This test is very painful and will not be fun for Abby or us. This test will assure us whether or not Abby has all of the feeling in her legs.

The good news is that they are trying to schedule the urodynamics and the EMG on the same day so that we only have to travel to UVA once. It will make for a long day, but at least Abby will only have to go through the nastiness on one day.

It meant so much to me when Dr. Jane looked at us and said "I can't cut into that beautiful little girl without knowing that there is a good reason behind it." We agree Dr. Jane, we agree.

If we find no reason to believe that the tethering has caused issues with her bladder or her nerves, we will continue to monitor with yearly MRI's to make sure that there is no progression.

If there is anything that anyone has questions about that I didn't answer, please feel free to leave a question in the comments section. I'll answer the best that I know how. Again we appreciate the prayers--they are working!