Results of our Neurosurgeon Appointment

We had a confirming and encouraging appointment today with the pediatric neurosurgeon in Chicago today.  We found the office and the staff very child oriented and friendly.  Everything went pretty much in the way we were expecting.  The doctor felt that both a decompression surgery and the fusion on the vertebrae to skull were necessary.  He indicated that the presence of central apnea was not a small thing.  He described it as the brain stem showing that it was struggling, so while we feel that Sam seems asymptomatic as far as "classic Chiari symptoms" he has the presence of a major symptom that can't be ignored.  The presence of central apnea already shows that the brain can not function properly in the present condition.  He also said there is an imbalance of muscle strength between the right and left side of his body.  Not something we notice, but also is a symptom that should not be ignored.  We knew going in to the appointment that decompression along with fusion was probably what they would recommend, so while we would have loved to hear other news, we are not surprised or dismayed at this outcome.

Now for the good news (if you come from the standpoint that the surgery was a given).  The doctor is hopeful that he can limit the decompression to only taking bone from the bottom of the skull.  This means that he may not need to do a duraplasty (go into the brain tissue).  Without the duraplasty there is zero chance of damaging brain tissue during the surgery or having a leakage of spinal fluid.  These are the two most major complications we were looking at.  He did indicate that during the surgery they would monitor the flow of cerebral spinal fluid flow, and that if it did not improve enough they may have to do the duroplasty, but he is hopeful that he may not. 

He also hopes that he can leave in the 2nd and 3rd cervical plate.  If so, then Sam's fusion can go from the skull to the C2 plate.  This is a major thing.  While he would still experience a major loss of neck mobility, it is a significant improvement over having to fuse further down.   Again, during the surgery he may find it necessary to fuse further down, but he said he has had a lot of success fusing to only the C2, and that he is hopeful that that would be the case.  The doctor felt confident that Sam should be able to drive a car when the time comes.  I am praising God for this!  It has been one of my concerns as this will make a big difference in independence in his life.

The doctor also will be determining, based on a set of neck flexion x-rays, if we may be able to move Sam's neck to limit the amount of the spine that is invading the brain cavity.  He will recommend after the x-rays anywhere from a few hours to 2 days of traction in the hospital prior to surgery.  The benefit of this is that he can then be fused in the best possible position and greatly diminish the chances of needing to have surgery through to mouth in the future to remove the "offending" tip of the spine.  While this does not sound fun, it is way better than possibly needing additional surgery in the future.

We do not have a surgery date yet.  The doctor asked us to call his administrative assistant tomorrow morning to schedule.  I am expecting it to be within weeks as opposed to months.  I would have waited to make this post, but I know there are several people who are waiting to hear how today went, so I will post a date when we have it.

We are very pleased with the doctor as well.  When we asked about his experience with this, he indicated that most of his patients have more significant problems than Sam's.  He said that quite frankly, this is one of the easier types of surgeries he does.  We felt confident in him and his ability to provide excellent care for Sam.

Sam is doing OK.  He said he is sad, but does not seem overly down.  It is mostly that he is fine but has reasonable moments of sadness about having to go through this.  I would say he is responding as well as possible.

So our prayer requests:
1- That God would continue to have His hand on us.
2- That traction time could be short, successful, and as comfortable as possible
3- That the decompression could be limited to the lower skull only
4- That the fusion could be limited to the C2 and that Sam would maintain as much mobility as possible
5- That the surgery will be scheduled in God's timing
6- That insurance would continue to work well with us on this
7- That Sam would find comfort and draw closer to God in this journey

We are also again praising God for the work He is doing in this situation.  We have felt His presence and comfort in a way we never have before.  I feel hope for the future and am continuing to trust God as we walk through this.  Again I also praise God for all of you, and would appreciate your continued prayers.