Chiari Online Support Group

Please help

#1

Hi I’m a mother to a 6 yr old boy. He is showing no signs of problems but through a ct scan from a fall ,checking for broken facial bones, he has been diagnosed with 1) basilar invagination
2) occipital c1 assimilation
3) thoracic syrinx
We are devastated and overwhelmed
The neurosurgeon here in Columbus Ohio proposed to do surgery of 1) posterior decompression 2) c1 laminectory 3) occipital cervical fusion 4) rib Graft harvest

Basically put a plate ,two screws and his rib into his neck to fuse it. This will leave him with no mobility of his neck.
Please help us. Has anyone heard of this? Anyone had this done ? Anyone know of a dr they recommend. I have sent our Mir to Boston, Cincinnati , philly, Utah and Iowa . I need numerous second opinions . I’m scared for my son . This surgery will forever change his life.
I’m new to this site and I would appreciate any help. Thank you !!

#2

Sorry to hear of the issues.

The sequence you describe is not uncommon.

Getting additional opinions is certainly wise. In pediatric neurosurgery, there is a separate board of pediatric neurosurgery(guarantees they did a fellowship, have a practice that is at least 75% pediatric, and meet at least minimal requirements). The listing of diplomates from the American Board of Pediatric Neurosurgery may be found at www.abpns.org

I would suggest you want a board certified pediatric neurosurgeon operating on your son.

In general, Chiari + syrinx = decompression(assuming the syrinx is large enough, usually at least a diameter of 5mm or more).

You are correct that an occipito-cervical fusion is a life-altering operation so you want to be sure that is the necessary pathway(I tend to be very conservative in my pediatric fusions, as they limit growth and can have additional complications in a growing skeleton). That being said, a fusion is the lesser of 2 evils when compared to a trans-oral odontoidectomy(removal of the dens/basilar invagination by cutting open the back of the mouth to reach it).

I would strongly suggest finding a pediatric neurosurgeon with whom you are comfortable and proceeding(after a few opinions). You will almost certainly get some conflicting opinions. Find what makes the most sense to you. Remember, this is a big step. There is an advantage to being near home(there have been families who have moved to Orlando for their care in my case). It is very difficult to handle emergencies remotely(and rarely do things go perfectly).

I'm not sure I added much peace of mind with this post other than to say, your current recommendation is reasonable(without viewing the images) and getting additional opinions by sending out the MRIs is smart.

#3

Thank you for your help. It’s very confusing and overwhelming . Advice is appreciated.