Neurosurgeon: "The radiologist said the CT scan was normal but it really isn't..."

[Music in My Heart]

With that statement was resurrected an issue with my little girl that we had thought resolved for over a year. The small bump that she'd had on her head for about 18 months turned out to be a symptom of pancraniosynostosis. While her brain had continued to grow, her cranial vault had not. Nine days later my child was laying on the surgeon's table having a craniotomy to provide much needed space for her brain.

The good news is that my child has come through the surgery well and is on the mend.

The reason for this post, however, is to educate as many people as I can about something that we learned the hard way.

My 4-1/2 yo child had a small bump on her head about which she would sometimes complain. While she was inconsistent about her complaints, they were steady enough that we finally brought her to the pediatrician who in turn ordered a CT scan. With the radiologist's finding that her brain was "unremarkable", the pediatrician and we concluded that it was just an anomalous structure on her skull.

At the same time, my daughter was being screened for retinopathy of prematurity. Two ophthalmologists noted papilledema but concluded it was a non-critical atypical condition. Because she manifested no neurological symptoms, they ruled out elevated intracranial pressure and made their diagnoses. The "normal" CT scan confirmed their beliefs regarding the intracranial pressure.

About a year after the CT scan, my newly six-year-old was being seen by her pediatrician for a well-child exam. Though the bump hadn't really changed, the doctor decided to refer us to "someone who's got a lot of experience feeling bumps on kids' heads" -- the pediatric neurosurgeon.

We learned that craniosynostosis very rarely presents in older children. It's even more rare for it to be complete fusion of all sutures. None of the pediatricians in our doctor's practice (six in all) have ever seen it.

The reason for this post is to share what the neurosurgeon told us during a long follow-up conference during which we expressed our dismay that this condition had gone misdiagnosed for so long:

To paraphrase him: This is the bane of my existence. I keep trying to get these guys (the radiologists) to pick this up but it's becoming a lost art. I understand why you're upset but the truth is that this condition probably gets missed by the radiologists 50% of the time. Just be glad that your pediatrician made a referral because it just didn't seem right. Many of them don't and I often see kids in much worse shape than your daughter."

So, my caution to all of you with children in your lives: Be mindful of this story if you see a hard bump on their head that doesn't seem to be anything. Even if the radiologists says it's nothing, INSIST on seeing a pediatric neurosurgeon who specializes in craniofacial abnormalities. While your pediatrician has probably seen a number of kids with craniosynostosis, they probably haven't seen it in an older kid.

If an ophthalmologist says that papilledema is not due to elevated ICP because of the lack of neurological symptoms, remember that kids can withstand sustained ICPs that would kill and adult.

For what it's worth: The surgeon expressed the belief that this condition might be related to her extreme prematurity. It seems like parents of micropreemies should be cautioned.

[RainDreamer, BSN, RN]

Thanks for sharing that.

Glad to hear everything turned out ok. Someone was really watching over your little girl :)

[DutchgirlRN, ASN, RN]

Hallejah for pro-active parents and pro-active doctors!:w00t:

[nurseaboveboard]

Yeah, medicine is NOT a perfect science. My sis had a hisory of ovarian cancer, surgeries, chemo, regular follow-up scans, etc. Before a recurrance was detected, she had at least two "normal" scans, but was symptomatic. This info I was getting from my sis. Later, when we requested the records, I saw the written reports, which showed "a normal size uterus." She hadn't had a uterus for years! It was a recurrance of cancer. This "uterus" was a mass. She has passed on now, but I will always wonder about her outcome if they had read those scans correctly. I hope your daughter continues to do well.

[nursemary9, BSN, RN]

Thank you so much for sharing; even those of us who have no children can benefit from your experience.

I'm so happy to hear that your daughter is doing well now; she really did have an Angel looking over her shoulder!! Her Angels were her parents and a really concerned pediatrition!!

[CRNAGAL]

I'm glad your daughter's doing OK. Thanks for sharing.

[NurseCard, ADN]

I hope that I don't sound crass for suggesting this... but have you thought about submitting your daughter's story to the show "Mystery Diagnosis"? If you've never seen it, it comes on the Discovery Health Channel, and it's all about patients with very hard to diagnose conditions who keep getting seen and keep getting told that what they have is basically nothing, or something very minor... until they are finally seen by someone who knows their butt from a hole in the ground :), and gives them the correct diagnosis. They take submissions from viewers on their web site.

I'm a huge fan of the show. I have it set to DVR every week.

[GIRN]

It's stories like this that make us "Paranoid Parents." Even though the doctors say everything's OK we think about stories like yours when the doctors were wrong! I'm so glad you finally got the right diagnosis and hope the surgery helps. Thank goodness you were persistent. Good luck with your little one in the future!

[beachbum3]

Thank you for sharing your story- I'm so glad everything turned out ok with your child.

[Jolie, BSN]

What an excellent example of the importance of listening to parents and their "gut" beliefs regarding their children, even when nothing appears to be wrong. Something we would all do well to remember in our own practices.

[locolorenzo22, BSN, RN]

right on...thanks for sharing your story with all those parents out there..and for helping us nursing people become more aware of conditions....