My son was diagnosed this week and I am looking for the top pediatric neurosurgeon that deals with chiari. I would appreciate any and all recommendations!
Thank you!
Where are you from?
Arkansas but I am willing to travel anywhere.
iowa city Dr Menezes
I completely understand the concern but you may be jumping the gun.
While many neurosurgeons are the ultimate MD to help with Chiari, seeing a neurosurgeon is rarely the first step.
See your primary care MD and assess whether the Chiari is even an issue(they are often incidental findings). For instance, if the MRI was done for an autism work-up, there is little need to see a neurosurgeon. If the Chiari is an issue, the first step is usually a neurologist, who will try to achieve maximal medical management.
Should symptoms persist after medical management, that is the time to consider neurosurgical consultation(neurosurgeons, after all, perform neurosurgery, which is ideally not the first step in Chiari management).
Should you proceed with pediatric neurosurgical evaluation, at a minimum, you want the neurosurgeon to be pediatric board certified. That can be assessed at www.abpns.org
Coming to sites like this and assessing other’s experiences is also very helpful. Dr. Menezes is very well respected(although in his 70s, I’m not sure he is taking new patients).
You will note there is only 1 pediatric boarded neurosurgeon in Arkansas.
I hope these thoughts have been of some assistance.
I totally agree with Dr Trumble 
It’s very frightening when you first hear about Chiari and I totally understand wanting to find someone who really knows the condition.
If the you found the Chiari as an incidental finding and there are no symptoms that is likely good news. My daughter had an incidental finding of chiari and had no symptoms. She did however have a large syrinx and so we had a decompression 3 1/2 years ago, and a second one 2 years ago. Given the size of her syrinx I do believe surgery was necessary…however she has had nothing but serious issues ever since and still has a syrinx. I do wish if I could turn back time that I had been better informed about the condition and really taken my time to explore all options. (we are in Canada and while we have fabulous neurosurgeons here we do not have a specific chiari specialist that I am aware of,) We met with a neuro surgeon this summer whose mantra is
"the best surgery is no surgery."
There are also some good pediatric chiari groups on FB. You will often find families on these groups that have had a lot of challenges or complex issues which is why they are looking for support so please don’t let others stories freak you out! There are a lot of variables with Chiari. Good luck I hope your son does not need surgery.
My 11 year old son has been diagnosed with Chiari I. I have seen Neurosurgeons, Chiropractors and General Practicioners from coast to coast including contacting a surgeon in Spain. The first question to ask is does your son have symptoms or was the Chiari discovered incidentally while looking for something else.
My son is asymptomatic thank God, however he is being monitored by Neurosurgeon Dr. Greenfield of Cornell in New York. Dr. Greenfield is a wait and see doctor and will only recommend surgery if there is no other alternative. Dr. Greenfied performs 3 to 4 decompression surgeries per week.
Please let me know it you have any further questions as I have just returned from New York from seeing other medical professionals regarding Chiari.
I totally agree with everyone above. My son had his 2nd decompression surgery in June 2016. He is only 14 yo & is unable to function. He has not gone to school in well over a year. He has a constant headache, ringing in his ears, mottling of his legs from POTS ( which developed in the last year and a half) & severe sensitivity to sounds.
We have gone from doctor to doctor with no relief. If I could turn back time I would have NEVER consented to surgery unless he couldn’t swallow or breathe.
This surgery is life changing. There is no going back. It seems like more people have problems afterwards than is in the literature.
If you’re in that unlucky 5-10% your son’s life can be ruined & there’s no going back.
My son is trying online school this year. We just bought him a new laptop & my hope is that somehow his body will heal & he will be able to function in society at some point.
It’s very very heartbreaking for my son & our whole family. His childhood has been lost since his 1st surgery at age 8.
Good luck to you & your son. Hope you can medically manage him.