My 17yr old was just diagnosed in Sept. 2013 with Chiari Malformation 1. The Dr's in my area dont know much about this. The pediatrician told us its no big deal and wont cause any problems and isn't anything to worry about. The Neurologist told me to read about it online, because that's all the info she has on it. She is treating my sons headaches, but the med's aren't helping. He has had a headache, everyday, he says ever since he can remember. he also gets migraines a few times a month. he has hypothyroidism, he has asthma, environmental allergies, depression,aggression problems, ADHD, several learning disabilities . My question is.. can any or all the above problems he has be from the Chiari?? if they are, what can be done for them? I want to help him to be able to live a pain free life. To be able to go 1 day without a headache. I know that daily pain is the reason he has the attitude problems, but I don't know how to help him. I think the closest Dr who knows about chiari is 3 hrs from me. Any help or info would be great. Thank.
I’m so sorry for your son. I think the best thing that you can do for him is to get him to a Chiari SPECIALIST. Your pediatrician is just plain wrong. Most NLs are of little help and cannot be depended on to steer you to the right NS, your going to have to do that on your own. I know three hours is an inconvenience, but if this NS is a Chiari specialist considered it lucky, many of us have to fly to get help.
I know what it’s like to have a continuous headache, it’s terrible. Tell him I said to hang in there, there is a process to through and it takes some time, but there are many people with Chiari who get relief from their symptoms with the right surgeon.
You hang in there too mom, you are doing a good job!
Jenn
I second Jenn's post. Don't waste your time or your son's pain with these docs. He deserves an evaluation by a CM specialist. You have one in Cinn. here:
http://www.mayfieldchiaricenter.com/chiari.php
He's young and it's still a tough age to be going through that. Yes, hypo, etc. can be caused by CM, check the ed. videos on the TCI site here:
http://www.mayfieldchiaricenter.com/chiari.php
Good luck,
Geoff
T
gag said:
I second Jenn's post. Don't waste your time or your son's pain with these docs. He deserves an evaluation by a CM specialist. You have one in Cinn. here:
http://www.mayfieldchiaricenter.com/chiari.php
He's young and it's still a tough age to be going through that. Yes, hypo, etc. can be caused by CM, check the ed. videos on the TCI site here:
http://www.mayfieldchiaricenter.com/chiari.php
Good luck,
Geoff
Sorry, just noticed, the link to NY TCI is this:
http://www.chiariinstitute.com/dr_paolo_bolognese.html
I listed Mayfield twice above, but these are both ur closest CM clinics
Thank you everyone for all the info ... I plan on getting into touch with the place in Cincinnati...
Great, let us know when it is, and hang in there, the both of u.
Geoff
My 13 year old is very similar. I have Chiari too and get moody as well. We both also have allergies. There are sooooo many symptoms and each persons Chiari is a bit different. For my daughter overstimulation and eating or late meals really affect her behavior. I just keep in mind how crappy I feel at times and help her relax when she feels badly or is out of sorts.