Thursday, April 14, 2011
Dr. Fuchs does NOT seem like the expected neurosurgeon type. He is SO friendly and honest and laid-back. He answered all of our questions and encouraged us to ask more. He told us to call or email any time if we thought of more questions (which we did).
Sooooo.... she has a tethered spinal cord and needs surgery to detether it. Basically, when her spinal cord was forming in utero (around the 18th-22nd day after conception, before I even knew I was preggers), it didn't form correctly. Instead of a free floating spinal cord, hers attached to a bunch of soft tissue on the side and at the bottom. The problem with this is, it is stretching her spinal cord. In a normal infant, the spinal cord is free floating for a while and as they grow, it eventually moves up into the spinal column where it is protected. As you bend and reach for things, it moves up and down in the spinal column.
With tethered spinal cord, it is a problem because the spinal cord never moves up into the spinal column because it can't because of the attachment. As she bends and reaches, it stretches even more. This can be painful and neurologically can cause many problems, primarily with control of bladder and bowel function as well as walking issues with things like turn out and strength as well as scoliosis and sensory problems. Along with pain, it can also cause numbness.
The way he put it is, if she starts to have symptoms like those mentioned above, they are not reversible so once she loses control of her bladder, she would likely never have control of it. A catheter is not cool. A diaper now is fine but not so cool in high school. Although this truly is not funny, he was trying to lighten the mood and it was appreciated at the time.
Hearing that she needs surgery and a major one at that, it felt like tunnel vision, but in my ears instead. My ears literally hurt, they echoed, they rang. I fought back tears and looked at Nick and could tell he was too. I feel so bad for her even though she really doesn't have a clue what's going on right now.
I think we are lucky that it's being done now because if things go perfectly well, she may never know this was even done. She may never have any lasting problems from it. But... she may. Also, there is a 40% chance it can retether - that's a HIGH PERCENTAGE! How would we know it was retethered? Symptoms. We are lucky this time because we have the physical markers but if it happens again, it'd be because of symptoms. Remember, symptoms are not reversible. Augh...
Also, and this may not seem like much to many but if you put yourself in my shoes, it might seem like more. I know we'll get over it and I know in the grand scheme of things, it's not the biggest worry BUT Kennedy is the daughter of a PE Teacher and former athlete in every sport and current coach in practically every sport and the daughter of a former college soccer player. Kennedy can never play contact sports. I don't care what anyone says to me but that STUNG!
Kennedy's tethers are called a fatty filum terminale and a lipomyelomeningocele. Her surgery is estimated to be approximately 3 hours and she will be at Duke 6-7 days post surgery.