My 6 year old son was just diagnosed with Chiari...7mm. He's struggled dramatically with developmental delays, specifically fine motor with arms and hands, balance, and overall coordination. He also has growth hormone deficiency to complicate things. His Chiari was actually discovered by an endocrinologist. He's been referred to a neurosurgeon.
Any idea why he was referred directly to a neurosurgeon and not a neurologist? He's seeing Dr Mark Iantosca at Hershey Medical Center this Tuesday (12-31).
I'm also wondering if his case is one they'd consider the surgery for? I just have no idea what to expect or ask at the appointment!
Any insights, thoughts, or experiences would be greatly appreciated!!!
Ju Jo, so glad you are here and so glad your son got a diagnosis for his symptoms. You were rightly referred to an NS because surgery is the only treatment for Chiari. Medications can sometimes help pain and other symptoms, but they will not change the Chiari or stop the progression of it. Many of us have found that NLs are unknowing about Chiari and literally a waste of time and money. My advice to you is to have your little man tested for sleep apnea, and start doing research on pediatric neurosurgeons who SPECIALIZE in Chiari. You may or may not have one in your city or state, but there are several in the US. There is a list of member recommended surgeons on this site, it might be a good starting point. Just please don’t feel limited to a surgeon because you were referred, lots of NSs perform this surgery but not very many perform it on a regular basis- and there are differences in outcomes among these surgeons! Your son deserves the best person for the job.
I’m brand new to the site and to the world of Chiari, but I wanted to wish you good luck at the appointment. Hope things go smoothly and you get the answers you need.
Do you all think they referred us to a neurosurgeon because surgery is likely needed? The Chiari was discovered by my son's Endocrinologist as he was doing further testing concerning his growth hormone issues. He couldn't tell us anything other than that it was 7mm and he was referring us to neurology, which ended up being a neurosurgeon. I don't even know what 7mm means...is that likely to need the surgery? We'll know more Tuesday I guess...
Thank you all so much for your responses so far! Very helpful and reassuring to me and my husband that we're not alone in this whole thing.
Not all chiaris are symptomatic, but if it is there is only one way it will go- more and more symptomatic as time goes on. There is research and the opinion of many specialized NSs that says the longer an individuals brain and spinal cord are under duress, the more symptoms remain after surgery. Now, not every person gets surgery- some people have the wait-and-see approach. No person wants their child first in line for brain surgery, and I’m so sorry you are facing this diagnosis, but take comfort that there have been many before you and many now going through this. Unless your kiddo has threatening symptom- like apnea- then you can take your time in making the right decision.
This whole "apnea" thing is totally new to me! Is sleep apnea a common side effect with Chiari? How do we go about getting something like this checked out or will the neurosurgeon check for that? Are there signs for it? Sorry...maybe there's already a discussion on this...
Thanks again so much for the responses! You all have shed more light on this for me in this short discussion than in all the research I've done the past month.
Apnea is common enough that it’s my opinion all of us should be tested. It’s dangerous. Bring it up on Tuesday, if he won’t order the test move on to your pediatrician
You can usually see breathing disturbances about 2 hours into the sleep cycle with apnea.
I would ask about tethered cord and POTS while you are there. These are 2 commonly related conditions with Chiari. Could save your son years of unnecessary struggle.
On the upside, my daughter was diagnosed with Chiari about 1 year after me. That was about a year ago. She has good and bad days. But for 9mm I think she's doing pretty well without surgery. Hopefully that doesnt change as she ages like it does for so many of usry.
