Magdalena Follow Up - More Surgery

Long term readers will recall that Magdalena had surgery for her Right Coronal Craniosynostosis last June 29 at OHSU. Her surgery went quite well, and she has since made a very good recovery.

Two weeks ago, the girls and I returned to Oregon for Magdalena's mandatory four-month follow up visit with her surgeons. She also was required to meet with an optometrist, a physical therapist, and have a follow up developmental exam over the course of this past week. I was under the impression that these exams were all fairly routine - her vision was reportedly fine before the surgery (though she has some risk of advanced astigmatism due to the squint in her left eye), and she still has a head tilt, though it has drastically improved from what it was last summer.

So then we saw the eye doctor. Here is the email I sent our family after the appointment:

Magdalena had her eye appt this morning with Dr. Daniel Karr. Turns out she has a right superior oblique palsey. This, in plain English, means that if she doesn't tilt her head, she sees double. He determined it by having me hold her head straight, then watching her track a toy - saw that the right eye went down as the left tracked, so she only would follow with one eye. When she tracked with the head tilt, she tracked with both eyes, and when they just had her use one eye (covered up the other), she'd track with that one eye.

The good news is that she tilts her head to allow herself to use both eyes, so there is no problem with her vision currently. However, the muscles in her right eye (definitely the superior muscle, possibly more) are not strong enough to allow her to see correctly when she holds her head straight, and she will need surgery to have this fixed. The sooner the better, he said, but not unless we are sure that the craniosynostosis surgeries are done (not including the 4% chance of another surgery before age 6, just if the surgeons say anything else is imminently required when I see them on Wednesday).

He suggested NOT doing physical therapy on her head tilt until the eyesight is corrected as this may cause her to stop using her right eye all together, and would restrict her eyesight, possibly causing a lazy eye.

I have to return her to Casey Eye Institute in one month on a Tuesday for the three clinic doctors to independently evaluate her and determine the severity of the problem. Not sure why this was not noticed before - but they never did force her head straight and evaluate before, so that could be why.

For the surgery, it is an outpatient surgery and takes approximately 30 minutes per muscle (so if just one is not strong enough it will be short, but longer if there are two ore more that they have to correct). She will be anesthetized.

The recovery takes several weeks because they need to keep having her back in for evaluations and possible eye patch wearing/fittings. This could be up to 6 weeks. He said they could work with our schedule and hold off until late March, but again - we cannot do the physical therapy on her neck until this is corrected, and the longer she has the head tilt, the harder it will be to treat that. So we probably should try to have the surgery as soon as we can manage it.
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Then on Wednesday I saw the surgeons, as well as had the developmental exam. This appointment was much better, as I learned a lot. Here is the email from that day (note: Alex could not return to Oregon with me, so these emails were primarily for his benefit):
Today Magdalena had her post-operative developmental exam and her follow up visit with the craniosynostosis surgeons. The developmental exam went well – basically she is on track, no negative outcome from the surgery.

The visit with both Drs Kuang and Selden also went well. I had many questions that I wrote down and took notes on since Alex could not be there.

1. Head bumps – top of her head and forehead – these are the absorbable screws from her surgery. It is normal for them to poke out a bit like this as the bone grows and shifts them. It will not affect her recovery at all. They won’t be completely absorbed for 1-2 years, but after that the bumps will be gone.

2. Flat spot – the docs thought M’s flat spot looks much better, and said there is no need for a helmet. They said helmets are generally most effective between 6-12 months of age, and they don’t use them for synostosis patients. Dr Kuang said that Magdalena will probably always have some persistent misshaping, but her hair will cover it, and it will not affect her neurological growth.

3. Head tilt / eye surgery – No reason to hold off on eye surgery, which is apparently required for 30-40% of coronal sysnostosis patients. Either they did not tell us this before, or I did not pay attention, as the need for surgery seemed completely out of the blue to me. Dr Kuang said she’d send Dr Karr a note to proceed with his plans for Magdalena’s eye surgery as he sees fit.

4. Tilt – she has a good range of motion, it will not cause scoliosis, but it is definitely the best thing to do for her to NOT have the tilt, which means to have the eye surgery and move on from there.

5. Sacral dimple – Dr Selden reviewed the results again, which were normal but with a bit more fluid on the bottom of the spinal cord than usual, though still within the normal range. No tethering was seen in the MRI. At this point, he says it is probably fine, but given the slightly elevated fluid levels, recommends we do one more MRI when we have the CT scan done in 2012.

6. CT Scan – only ONE more scan to be done, 2 years post-op, which is the summer of 2012 (and we’ll do the MRI at the same time). This made me feel better about the radiation levels, as the optometrist was shocked about her having so many CT scans (I thought they were annual until she was 6, but that’s not the case).

Our next follow up visit with the surgeons will be in the summer of 2011, late June or early July (annually until she is 6).
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So there is lots still going on, needless to say - things we were not necessarily prepared for. But we're going to do everything we can to make sure that Magdalena will be okay - that is our top priority.

Here is a photo history of her surgery and head tilt, including some new footage of the post-op CT scans!



CT Scan of her skull before surgery (has been posted before):

From Blog All

Pre-Surgery (day of - courtesy of the doctor):

From Blog All Three

Post-Surgery (day of - courtesy of the doctor) What a difference!:

From Blog All Three

Post Surgery CT Scan - Side View:

From Blog All Three

Post Surgery CT Scan - front view (note the symmetry in the eye socket orbitals):

From Blog All Three

Pre-Surgery Tilt:

From Blog All Three

1 Month Post Surgery Tilt with Tot Collar:

From Blog All Three

1 month 1 week Post Surgery Tilt withOUT Tot Collar:

From Blog All Three

Three weeks later - end August - having worn the collar all month, but this picture without the collar (looks better to me):

From Blog All Three

End September - looks much better:

From Blog All Three

End October - Still Tilting, but only slightly (not much improvement over end September, I don't think):

From Blog All Three

November 3 - this is what the surgeons saw - still tilting slightly, but now we know why. But we don't want this to be her "natural" pose, so we're going to keep plugging along!

From Blog All Three