My 16yr old son diagnosed with Chiara 1 Malformation

[JulsMomma]

Hi,
I'm new to this site,
And wanted to say thank you for all the helpful information!
My son Julius is 16 has had headaches on and off for over a year. Here's a little back ground on him. He has played football for over 6 years, when he was a freshman he had a concussion and last year as a Sophmore at a football game he broke his nose "Deviated septum" and ENT MD would like him to wait till out of High School to do surgery, since my son wasn't sure if he wanted to return playing any contact sports. So he can only breath out of one nostril. He did however decide to take this year off from Football due to increase almost daily back of the head/ neck headaches. Sometimes he wakes up with one, he has had sensitivity on the right side of head, he described like someone stabbing him and getting a little lightheaded. He has had some gastric, diarrhea on and off. His Doctor said it could be due to stress of school or nerves. He has a short fuse/ can get angry real quick off the littlest things. I always assumed it was a teenager boy thing. He doesn't have the best sleeping patterns, I have caught him up playing video games at 12 midnight, so I know he's not getting his full 8-10 hours of sleep. I'm trying to get his sleep under control I have been taking his power cord out of room at night.
But 2 weeks ago I took him in to see a Doctor due to him googeling his sx's and thinking he might have a tumor. While his fairly new Pediatric Provider was out of office we went to see a covering provider and she was concerned that someone his age having daily headaches and so she ordered a MRI, which came back that he has Chiari 1, 6mm malformation
His Primary Doctor called me late yesterday with the results and referred him to Nuero Surgery Dept, which they called me a hour later and scheduled a appt in 2 weeks.  I haven't told my son the results yet, he wasn't home due to being Homecoming Week at his school and the Big Football Game last night. He spent the night at friends house. I picked him up a hour ago,And he just left to do the final behind the wheel driving lesson. I just don't want him to worry about his diagnosis and start stressing. He also has a big dance tonight and then his Driving test at DMV on Monday. Should I wait till Monday after his DMV test to tell him?

[selmaS]

  Hi and welcome to the Chiari forum.

I too would wait....teens are stressed enuff with school and tests of all sorts....so no need to add more to it...but do let him know once he aced his driving test .....stress can make symptoms worse....but his moods swings/anger issues could be related to Chiari and not his age.

And I agree you do need to look into a true Chiari specialist not just a NS as most are not familiar with ALL related conditions or experienced to deal with this and related conditions.

I see you are in CA are you part of the Kaiser network for INS?

I will post some Drs names for you to research...as the list is not a referral nor endorsement ....it is mainly a tool for you to get started researching Dr....so you will want to educate yourself on everything as well so you will know when you have found the right Dr for your son.

CALIFORNIA

Dr. Langston Holly
Dr. Ulrich Batzdorf
UCLA, Westwood, CA
UCLA/Santa Monica Medical Center

Paul S. Jackson, M.D., Ph.D.
Palo Alto Center
795 El Camino Real
Level 3, Lee Building
Palo Alto, California 94301
[phone]

Dr. Jorge Lazareff, MD
Ronald Reagan UCLA Medical Center
200 Medical Plaza, Suites 140
Peter Morton Medical Build
Los Angeles, CA
[phone] Patient appoint.

Dr. Samuel F. Ciricillo
2800 L Street $5
Sacramento, CA
916-454-6850

Keep in mind you may have to travel to get to the right Dr....
Just know you are not alone

[Emme80]

I, personally, would wait to tell him after his DMV test as it may overwhelm his mind. However, some don't "react" so this kind of information....some tend to just say 'well, until I know more, I'm not going to twice about it'. I, for the most part of my life fall into the "overwhelm" category. The only reason I didn't becomes overwhelmed that I was being sent to a Neurosurgeon is b/c I'd been DX'd sum 10yrs. ago & knew that if & when symptoms (and CSF) were impairing life, then I was looking at surgery. So... You know your son & how he responds to such info.
I personally, would've wanted my mom to wait to tell me & as well, she would've known if waiting to tell me b/c of something-if it was something important to me, that I needed to concentrate on-she knows me well enough that she would've done what was best for me. Maybe waiting to tell him will allow him to enjoy his dance & other things happening w/him & not fill his mind w/o any unnecessary worry that he can do nothing about right now anyways. But, only you know your son. It's great that he has a mom like you by his side.
I would suggest that you seek out a Chiari specialist... Do not just settle on the 1st NS your sent to. It is KEY to find one that knows about Chiari ( knowing FAR more besides just knowing its pronounced "Kee-ar-ree"... A lot more than that. I know selma will likely hop on at some point to give you more info than I ever could attempt to know. As well, a list of Chiari specialists that can start to guide you in the road down Chiari. I am just a gal, 4week  post-op. I had somewhat low tonsil descent , but fat thick overcrowding that ended up obstructing CSF flow& symptoms that only really raged in the least year. Chiari is a complex, tricky condition. But, there are many who will help you much than I ever could!( like understanding the importance of ruling out other underlying conditions being rules out, Dr's, etc.)
One thing I DO know right now-good moms are a precious thing. I say this as a 40yr. old gal, 4weeks post op who needed her momma. So, he's a lucky boy! Best wishes to the both of you!