New here. Here’s a little bit about our story as it’s just beginning to unfold. For the last several months, my 10 year old son has complained of shocking/stinging pains in random places throughout his body, trunk, limbs, head, even in his ear. Describes them like and electrical shock and even getting stung by a swarm of wasps at times. I’ve had similar experiences throughout my life but only in my back, neck and face and never bothered with seeking treatment, just dealt with the pain. Decided I didn’t want to ignore this and let him live with a life of pain so I took him to his pediatrician. He noticed a slight scoliosis and sent us to an orthopedist, which I thought was ridiculous since his pain seemed neurological (I’m an RN and hubby is a PA) After taking him to see 3 different doctors, the neurologist ordered labs, emg, and and MRI. He called this week to report that he has chiari malformation at 1.5cm. Said he usually sees them less than 1cm so is sending him to a neurosurgeon. The labs were normal other than a positive ANA, and the EMG showed bilateral carpal tunnel, which surprised us since he is asymptomatic. He has a history of headaches and constantly complains that he can’t concentrate. We homeschool and there are days where he just sits and cries because he can’t stay focused on his work, but he is very smart, just re-reads the same info over and over at times and it still doesn’t soak in. I’ve discussed putting him on add meds in the past and my husband won’t even discuss it. Just says absolutely not. Ugh.
So now we are waiting to hear from neurosurgeons office for an appointment. I feel like this may be giving us some answers, just not necessarily the ones I wanted.
For pediatrics, you also want someone who is fellowship trained in pediatric neurosurgery. There is a separate board of pediatric neurosurgery.
www.abpns.org has a listing of all diplomates of pediatric neurosurgery. You'll note there is only 1 MD overlap with Razzle's list. Ideally, your choice would be on both lists. Perhaps not as the first step, but certainly as a step before making a final treatment decision.
As an aside, from the symptoms you describe, with a first degree relative(son) with a Chiari, you should probably get an MRI as well, particularly if your symptoms are bad enough to consider surgery.
Thank you all so much for your responses. We went this morning for the follow up with neurologist and requested a referral for a pediatric neurosurgeon in Oklahoma City, Dr. Mapstone. It’s about 1.5 hour drive from home, so not too bad to make sure we have someone who knows what they are doing. Spoke to a friend who has this herself as well as all 3 of her children, and this doc came highly recommended. I’m really glad I reached out and got the responses you all gave me, or he might have ended up in the wrong hands. Thank you!
You should see if his Atlas bone is out of Alignment. I just had mine readjusted with amazing results. I mention this because you said he has a slight scoliosis. I did too. My right shoulder was extremely uneven with my left. After the adjustment completely straight. I was astounded. If your sons is out of alignment its a completely pain free very quick procedure. Good luck hope this was of some help.
Interestingly, our pediatrician noticed our daughter had a very mild scoliosis (4 degrees) on the right side. Shortly after, she was diagnosed with chiari (10 mm) with extensive syrinx, more on the right side then the left. After surgery, her syrinx resolved and so did her scoliosis. Coincidence? I think not.