So I didn't mention this before, but on the day of Maggie's surgery her orthopedist from Scottish Rite Hospital came over to Children's' Hospital in order to move Maggie's head and neck while she was under anesthesia (yes, the third doctor to want to do this). I thought it was so neat that he made the special trip. Turns out, he and Maggie's neurosurgeon are buddies and had been skiing together the week before so they obviously has been discussing our little Maggie!
Anyway, he came out to the waiting room after he "manipulated" her neck and showed us pictures on his digital camera of Maggie's head in all different positions. Her neck was able to be positioned straight up and down, which we knew. But as I suspected, they could not turn her head all of the way to the right nor could they tilt her head to the left shoulder. His little exam confirmed what they've already said : her sternocleidomastoid is tight, but it's not so tight to warrant cutting of that muscle.
You see in a typical baby with severe torticollis, the sternocleidomastoid muscle is so tight that the baby can't move out of this tilted position:
Maggie looks like this baby (except she tilts to the opposite side) but she can move out of this position and that's why doctors have been thrown off .
(The sternocleidomastoid muscles)
A few years back it was very common for surgeons just to "cut" the sternocleidomastoid muscle to allow it to stretch, but doctors no longer do this surgery very often because of permanent complications that can occur. And three out of the four surgeons we saw did not want to cut Maggie's because hers is not that tight.
That is why we went through MRIs and CT scans to see if there was something wrong with her skeleton or brain to see what else would be causing this, since it is obviously not the sternocleidomastoid muscle. The last time we saw the neurosurgeon a month ago after those 3D CT scans, he concluded that perhaps it's not her sternocleidomastoid muscle but her trapezius muscle and wanted us to talk to a Physical Medicine and Rehabilitation Doctor about doing Botox. At that point, the Scottish Rite group didn't think it was a muscle issue at all; therefore, they didn't think Botox would work. But after her two doctors got together last Friday and moved Maggie's neck, they both agreed that it's her trapezuis muscle that is extremeley tight. It most likely didn't form and stretch out properly because of how she was positioned in the womb without any amniotic fluid.
See the trapezius muscle in the diagram below:
They both agreed that the trapezius and sternocleidomastoid muscles should be injected with Botox (to paralyze them temporarily) so we can position her correctly in a brace with little discomfort and hopefully get her understanding how to hold her neck up normally. If the brace doesn't work, then we will have to do a halo (which is a permanent metal halo screwed into her skull - so hope it is doesn't come to that).
So the good news is that two doctors finally agree on a potential cause and solution to the problem. It took five months for this to happen, and although it may turn out that none of this is true, at least for now her two main specialists are on the same page - which is huge!
I am sorry for the long medical lesson, but I know there are many people who don't really understand why it's been so hard to figure this out and why the surgeons don't just cut the sternocleidomastoid muscle and be done with it. Although it has been a frustrating jounrey, I am so thankful for that the surgeons we visited did not rush to fix her by cutting the muscle, and instead were cautious about finding the true cause of her torticollis.
So we are meeting with the "Botox" doctor on Wednesday and I'll be interested to see her take on all of this. As I have said before, I am very nervous about using Botox because of what happened to a friend's child after having it done. I really don't like the idea of them shooting poison into her such a sensitive area and am very aware of the potential complications. But at this point there are no other tangible solutions, and we have to do something to try and help her. I am praying for discernment and, as always, that God will continue to lead us on the right path as we try to figure out this medical mystery.