Experts?

[Jdbsmom]

Hi-I'm very new to this Chiari forum.  10 year old diagnosed this week.  Waiting for NS consult.  I'm having difficulty finding the so-called NS "specialists".  We are in NC but will go wherever necessary.  I'm seeing some evidence of experts in DC, Pa, Boston, and NY.  Any help with surgeons who really know what they are doing will be really appreciated.  Thank you-Jo

[jacmurphy]

Hi and welcome.
There's a list here of NS that people have used.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Hope this link works.
God bless.
Jackie.

[Jdbsmom]

Thanks Jackie-very helpful-unfortunately one recommended in NC has had his license revoked twice but the Duke contact is very helpful.  Thanks for your reply! Jo

[pamk5]

Hello and welcome!  I am sorry your child has been diagnosed.  It is hard enough being an adult going thru this.  Just wanted to make you aware of the fact that alot of the true CM specialists have had issues with medical boards, etc.  One of the reasons for this is because this surgery is controversial and alot of docs wont acknowledge CM is symptomatic.  Or even diagnose it if it is less than the textbook 5mm herniation.  Which is referred to as Chiari Zero.  Dr Rosner that you refer to as being revoked twice is a pioneer in the field of CM.  He has been helping people with Chiari Zero for years and that is where alot of his issues have come from.  The medical community is very uneducated about this condition.  He cant be a help to you now since he isnt seeing children but I wanted to make you aware of the challenges with treatment and CM.  

I hope you find the info and support that you need here.  Please keep us posted.


Pam

[Jdbsmom]

Hi Pam,  Thanks for your follow-up.  I would LOVE to chat with you live sometime.  We are also in Charlotte.  We actually used a pioneer years ago in Minnesota for a difficult repair to our son's esophagus when he was just a baby so we are very interested in finding the right doctors all around.  We are still so very early in this diagnosis and have not had all required tests done yet.  I think I will leave "befriend" you and leave you a note with my e-mail so we can chat live sometime.  thank you so much.  Jo

[pamk5]

I am happy to help anyway I can.  

[Fran418]

Pam,
    My daughter also 10 was diagnosed with Chiari. We have a neuro guy we like because he is related to a friend and has taken the time to explain everything to us in terms we can understand. We are from NYand live on long island. We thought about going to the Duke doctor because my mother in law lives near there. We have also gone to the Chiari Institute in Great Neck  NY. We are waiting on the final mri results to decide on surgery, The neuro guy we use is named Donald Krieff and is super nice with children similar in age.IT is good to get more then one opinion. My daughter can't eat and is on a feeding tube and also can't walk. She was athletic and always a good eater.She also has headaches .It has been a very difficult last few months for all of us.
                                                     Fran418

[Jdbsmom]

Thank you so much for your comments.  We are going in an hour to the ped. NL here in Charlotte to see the initial results of the MRI.  We know we have more tests coming along with a referral to a NS.  We are definitely getting more than 1 opinion from a NS-our son went through multiple surgeries for a rare form of esophageal abnormality when he was a baby that lead us all the way to Mn for final surgeries-this is all a little like deja vu, but on a more magnified scale since Jack is older.  Our symptoms are only minor right now.  So sorry your daughter is going through this.  Please keep me posted.  Jo