We had our MRI #3 follow up with Dr. Bollo
Cooper’s 6 month post op Foramen Magnum Decompression MRI showed that Cooper still had some compression and Dr. Bollo was worried about the compression Cooper was showing down his spinal cord around the cervical vertebrae. He was worried another procedure would be necessary and wanted to get an MRI right after Coop’s first birthday to see what was going on with the compression as well as his fluid levels.
Kids with Achondroplasia have large heads. And naturally those large heads cause them to have large ventricles. Large ventricles tend to naturally fill with fluid. This can alarm doctors to diagnosis kids with Achondroplasia with hydrocephalus, or water on the brain, but this is only a proper diagnosis if the child is having fluid problems plus pressure problems.
Cooper does show the fluid portion of hydrocephalus, but he doesn’t have the pressure problems. Common signs to watch for to indicate pressure fluxuations are: projectile vomiting, lethargic, head aches or inconsolable crying, bulging soft spots or raised parts of the head and temples, and eye bulging or being able to see whites above the iris of the eye.
Cooper did have a raised soft spot for a few weeks and it still will fluxuate every now and then, but Dr. Bollo has been watching him closely. He hasn’t been too concerned with Cooper’s risk of hydrocephalus because of his lack of symptoms, and his head size is completely average for kids with achon, and his head size hasn’t made any drastic changes. The only thing he told us was odd was how Cooper’s fluid levels changed from his 3 month old MRI to his 9 month and 12 month MRI’s. In his 3 month old MRI the fluid was all on the outside of his brain (which is normal), and then on his 9 & 12 month MRI’s the fluid was inside his brain in the ventricles (which is also normal). Dr. Bollo said he had never seen the fluid necessarily move this way, but said he just wanted to watch it to be safe.
Cooper’s first surgery was in February of 2015. The left picture shows the compression of the Foramen Magnum (the opening at the base of the skull). The left side picture shows the 6 month post op MRI which shows how the spinal cord has been decompressed and is allowing normal nerve function down Cooper’s spinal cord.
For the third MRI the main thing we were watching was Cooper’s cervical spinal column. The right side of this photo shows the 9 month MRI we did. You can see that there is still fluid (the white part around the grey spinal cord) around the spinal cord. The left photo is the 12 month MRI, which shows NO fluid around the spinal cord. This is a bad sign. The spinal cord needs fluid to function properly. Because of this Cooper needs another decompression surgery to decompress C1. While they are in there, they will also open up his Foramen Magnum (the opening of the skull) a little more and clean our scar tissue from his last decompression surgery.
We are scared for another surgery, but it is a little helpful that we know what to expect and things went so well after Cooper’s last decompression surgery. Before his previous surgery Cooper was not rolling and seeming to be delayed in his motor skills. Within a month after the first surgery Cooper started rolling and gaining better control of this head and neck. Tummy time because a breeze and he just improved so much with his gross motor skills. Now Cooper isn’t using his legs. He wont put any pressure on his legs. If we try to stand him up his legs just crumble underneath him. We are hoping after this next surgery he will start using his legs and wanting to try to stand.
SIDENOTE: Many people in the LPA community strongly voice their opinions that you MUST only see doctors on the Medical Advisory Board (MAB) who specialize in kids with dwarfism. Primary Children’s Hospital has numerous specialists, who see lots of kids with dwarfism, but it’s amazing to me how these doctors are discredited by the LPA community for not being on the MAB.
So, after we saw Dr. Bollo in August and we saw that another surgery may be needed, I was advised by several people to get a second opinion. So I did.
I tracked down all of Cooper’s MRI’s, MRI reports, Operation Reports, Labs, Dr. Bollo’s notes, and a detailed explaination of what Dr. Bollo was planning to do in the second surgery. I got in touch with Dr. Campbell’s nurse and emailed her back and forth about getting Dr. Campbell’s opinion on the necessity of a repeat surgery.
It took several months to finally get Cooper’s info in front of Dr. Campbell, but they did get back to me and this was their response to if they agreed with Dr. Bollo’s plan for surgery #2…
Dr. Campbell viewed the images. Please remember, he has not seen your child nor have we. He recommends that further eval for hydrocephalus because his ventricles are larger when he compared the images.
I am not sure what procedure you are planning. Let me know what else you need.
So at that point, my second opinion was pointless and was absolutely no help. Our information was very clear and to the point as to what we needed, and it was as if the doctor merely glanced at the MRI and blurted out whatever came to him mind.
So we scheduled surgery with Dr. Bollo, who has actually taught us much more about Achondroplasia and dwarfism than any other doctor, including our geneticist. So even though the LPA community has nothing nice to say about Utah doctors, I’ll be the first to say how impressed I was with the Primary Children’s Medical Center Neurosurgery Department, and especially Dr. Bollo.
Cooper’s surgery is scheduled for Wednesday December 9th, 2015. He will be having a Decompression of C1 and Foramen Magnum.
He will need to stay overnight in Primary Children’s Medical Center for probably two nights, depending on how he does after surgery.
We appreciate all the love and prayers and we thank you for your support!