Neurosurgery Follow Up - Fall Surgery

Today Meagan had her Neurosurgery follow up with Dr. R.  She had a CT scan first to look at brain development and also do a 3D reconstruction of her skull.  She has been severely overlapped for some time now.  As you know from before, her shunt has been changed several times to try and avoid this, butwe just never found the perfect setting for her.  Even half a setting higher, and she would poof fluid from between her skull bones, her soft spot would bulge and she would be miserable. We have had her set on a flow that was a bit fast, but seemed to work for her.  She was happy, eating, sleeping, and her fluid was draining well allowing for good brain growth.  Unfortunately, the "side effect" of not finding the perfect setting was having hers suture overlap, increasing the risk of premature fusion of the bones.  It also made her NSG monitor her closely to make sure that the faster flow didn't leave her with slit ventricles.

After her CT this morning, we met with Dr. R. at his office.  He explained everything to us.  As far as brain growth, tissue is still "fluffing out," slowly, but still fluffing....which is a good thing.  However he did notice her ventricles looked a bit small for his comfort level. Of course we want her ventricles to shrink from where they were, but,  this was a drastic change in a very short amount of time. Just from June 28th to July 11th, her vents took a sudden dive and had a significant decrease in fluid. Dr. R was not comfortable leaving her shunt flow where it was due to this sudden decrease.  He said we would try turning up her shunt pressure again and see if we could put a little more fluid in the ventricles to help them stay at a healthy level.   After he adjusted her shunt setting, we talked a little bit about the structure of the brain.  There is still a lot of crowding at her craniocervical junction (back of her brain) as we discussed before.  We are still going to watch that for now. 

Finally we talked about Meagan's head configuration and her overlapping sutures.  Unfortunately, Meagan's coronal and sagittal sutures have fused, and the metopic suture is also completely fused.  Dr. R said that  surgery is necessary due to her secondary synostosis. (Read about the surgery here: http://www.pedisurg.com/pteduc/craniosynostosis.htm)   The scan even showed where her shunt catheter is now pushed across the midline, and we don't want the pressure of the fused skull to have any chance of moving or dislodging it.  Dr. R said there was no need to rush into surgery next week, but he suggested because of Meagan's potential brain growth, and the fact that more than one area is already fused, we move sooner than later to prevent any stalling of progress.  He also said since she will need it done, he prefers we do it younger than letting her get older because the bones will be softer to work with now, and there will be less blood vessel involvement under the skull bones the younger she is.  This was no "surprise" for us but I wasn't 100% her bones had actually fused.  After her CT today, of course I was sure.    Dr. R is VERY conservative when recommending anything invasive for Meagan, though, and because she is doing well, has always preferred a wait and see approach to other issues she has had.  Another Neurosurgeon could have easily operated on her a few times now, and he has avoided that. So for him to explain the pros and cons of doing the synostosis surgery now versus later, and have him conclude we not wait, made me know it is a worthy recommondation.  We trust him 100% with Meagan's care, and so surgery will be scheduled for this Fall. 

We are going to meet with the pediatric craniofacial plastic surgeon this month to talk about Meagan's case and make a plan, and then see Dr. R again in August to finalize surgery plans.  There is no "final date" as of yet, but it will probably be in September.

In the meantime, we will see how she tolerates this new shunt setting, and make plans to get care ready for our other kids while Meagan is in the hospital this Fall.  It is a little scary thinking about the surgery coming up and how involved it is, but, it is also scary to think about her brain growth being restricted by her skull fusing too small. If her shunt position, or brain growth were not at all in question or being affected by her skull, we would leave it be and decide to decline surgery. After going over all the details today, we know this surgery will give her brain more opportunity at continuing to "fluff out" and keep her shunt catheter from being pushed on.  We want Meagan to have the best life she can possibly have, and and moving forward with this, while not the 'ideal' situation, is the best thing we can do in this situation to help her reach her full potential. 

Meagan waiting to see Dr. R with Daddy